Raising awareness, diagnosis and treatment of PI together

World PI Week is a global campaign which aims to raise awareness and improve diagnosis and treatment of primary immunodeficiencies (PI). Explore the website to learn how you can make a difference and ultimately improve the quality of life of people with PI world-wide. You can  learn PI facts, sign the awareness petition, browse events or download resources. 

Linda
United States
Living with PI
"I finally was diagnosed with a primary immune deficiency disorder in mid-life, after spending years battling infections and developing asthma and undergoing sinus surgery. The use of a low-dose antibiotic daily has significantly improved my health and well-being overall. I am grateful to the helpful professionals I met in my journey."
Carmen
Belgium
Family carer
"My son was diagnosed with Bruton disease at the age of 2. We noticed that whenever we had gone out to a public place he got sick and had to go to hospital. We where lucky to find out so soon, he had no permanent damage to his organs. We have no doctors specialized at our region so I hope that this will become more known. "
Lauren and Chris
United Kingdom
Family carer
"Rowan was diagnosed with XLA just four months ago but in that short time the support and treatment we have received from Sheffield Children's Hospital and PID UK has been life changing for the whole family. Rowan now has weekly immunoglobulin infusions at home plus a daily dose of antibiotics and is a very happy and healthy two year old."
Saravanan
Malaysia
Living with PI
"I been falling sick very often since childhood. At 15, the puzzle was solved when blood test revealed I have Congenital Hypogammaglobulinemia after a massive pneumonia attack. Due to economic crisis in 1997 and irregular IVIG, I suffered more infection. After some surgeries and regular IVIG, I'm now able to lead a normal life. "
Demyana Kirollos
Egypt
Living with PI
"After years of suffering as a child from recurring chest infections and after numerous tests, I was diagnosed with CVID at the age of 9. Since then, I've been on treatment with immune supplements and steroids. I'm currently 24, have graduated college with high honors, started working and I enjoy a fairly healthy, unrestricted life. "
Stela
Romania
Family carer
"Subcutaneous immunoglobulin replacement therapy has made things much easier for us. Our son Daniel had subcutaneous infusions every two weeks at home, with no “scary” nurses or doctors trying to find a vein for the Iv treatment. His immune system is still slowly recovering but Daniel is now a very happy 4 year old boy. "
Maria
Cyprus
Living with PI
"Now, my primary Immunodeficiency is not my enemy, is my precious friend that I have to survive with it every day and being thankfully to the immunoglobulins treatments that makes me feel and thing what a wonderful life and world is out there!"
Brian
Canada
Living with PI
"Not long after that I began IVIg therapy and that fully changed my life. I had time between illnesses, I had energy and most of all I was given an opportunity to go play and be silly without worrying as much. Though it took a few years to get to a point where I felt healthy while on IVIg, eventually I got there and it was wonderful."
Glenda McGillivray
Canada
Family carer
"Immune globulin saved our daughter’s life and changed the course of her life, and that of our family. Kamille is now able to safely and successfully go to school, engage in the communityImmune globulin saved our daughter’s life and changed the course of her life, and that of our family. "
Joanna
United States
Living with PI
"I have been living with hypogammaglobulinemia for 45 years now. The first 2 decades of life I was untreated and at times dangerously sick. With treatment I have enjoyed a good quality of life. I only wish I had access to IG sooner! Early diagnosis and treatment is so important."
Otilia Stanga
Romania
Family carer
"My daughter (11 years old) was diagnosed with PID 3 years ago. She is doing great now, with monthly IVIG, but before that she went trough a lot of severe infections: chronic sinusitis, pneumonia, ear infections and even 2 episodes of sepsis. She also developed autoimmune diseases. I wish we could have access to subcutaneous IG in Romania!"
Donna Dunnican
United States
Living with PI
"I have been dealing with various illness for the past 10+ years. I finally found a doctor that had enough thought and compassion for me to test me.. I was finally diagnosed with CVID this year. We are still working out the kinks, as I am still getting sick, but I am a step closer to getting a little better. Not being sick every single day"
Joan Carles Añibarro Franch
Spain
Living with PI
"I was diagnosed when I'm 33 years, of IP, . In the years since diagnosis,we have advanced a lot in the IP community. We have also seen growing support from our Balear Association of Primaris Immunitaris Deficits ABADIP Thank immunologists has our doctors at University Hospital Espases professionalism and human touch to all of us.Thanks"
Joanna Tierno
United States
Living with PI
"I lived with hypogammaglobulinemia since I was 6 months old but my road to proper diagnosis and treatment was long, painful and sometimes terrifying. Treatment with immune globulin has been the best thing that has happened to me and has given me a good quality of life and a chance to grow older. "
Nicole Shearing
Australia
Living with PI
"34 years after having lived with constant sinus,ear,throat,chest,gut,bowel,bladder,kidney,skin infections and Golden Staph in my brain (Encephalitis anyone? It's such a joy!) as well as a placental abruption at 27 weeks I was diagnosed with CVID. The journey is long but together we're strong. Even stronger than Golden Staph! "
Xan
United States
Family carer
"We started our PI journey 22 years ago. Feeling alone and very unsure of the future for our beautiful daughter. She began IV infusions at age 3, then began SQ at age 11. So many scary things through the years, BUT we have survived, by helping to educate the medical and general population. She is NOW almost 23 and a Senior in College!"
Carla
United States
"I received gg shots from 7 mo - 9 yrs (bronchitis, pneumonia, asthma, allergies, GI). I’m 48 now. I’ve had 3 cases of shingles in 5 mos - I’ve been found to be IGG deficient and will begin IVIG infusions. I’ve urged my mother to get tested as she is the picture of PI. I’m thankful for all of the resources available today!"
Brandi Higgins
United States
Living with PI
"I started to have issues in 2007 after I returned from a cruise. I went to an ENT had abnormal results and that started my journey that opened my eyes to a whole new world. After 2 years of being really sick in Oct 2008 I was dx with CVID, Hypogamma. and Complete IgA Defi. I am on weekly treatment. Never give up #zebrastrong"
Ashlee BeGell
United States
Living with PI
"When I was 4, I was diagnosed with PI. My most profound memories as a child always involved the hospital and sickness. I have been on treatment now for about 16 years and have been the healthiest I have ever been. I go to UofA as an undergrad and plan on studying pharmacy as a grad student. My goal is to help children like me. "
Rebecca Lobell Kole
United States
Family carer
"The young man in the black jacket is Kole Lobell. He is 14 and lives with C.V.I.D and has been receiving monthly IVIG for almost 2 years. Today he will be starting weekly subcutaneous. Kole since birth was always sick and fighting to stay healthy. But he is a persevered man of God determined to have the Victory in the end. "
Kaylee Adolph
United States
Living with PI
"Kaylee is a very spunky 2.5 year old who was diagnosed with PI at 13 months old. In the year since Kaylees's diagnosis, we have learned a lot about the PI community and have watched the PI community and support in our area to grow and expand! Treatment has changed our lives in ways we never expected!"
Elizabeth Gibson
United States
Living with PI
"I got diagnosed with CVID at the age of 49 after YEARS of sinus infections, lung infections, and what seemed like living in the hospital for 6 years. It answered so many questions when I finally got diagnosed! IVIG has changed my life dramatically. I've got 7 months without being hospitalized and that's a personal record for me."
Jonah Kuhlman
United States
Living with PI
"I've been wrestling with repeated infections most of my life but wasn't diagnosed with CVID until 2011, just prior to my 50th birthday. Because my diagnosis came so late, much damage was already done. I began IVIG immediately after diagnosis but did not have much of a response. We must spread the word so that people are diagnosed quickly!"
Luka Fisher
United States
"Luka was born with a rare PI disease that may be unique to him. Fighting bravely like a lion, Luka endured 10 hospitalizations and a bone marrow transplant in his 21 months of life, passing away after complications. To honor Luka's spirit, his family established www.lukathelionfoundation.org to raise awareness of rare pediatric diseases. "
Nicki
United States
Living with PI
"I'm Nicki, 45 years old and have CVID. I have been getting immune globulin for 20+ years. The CVID has caused many other autoimmune diseases that I deal with every day. I take life one day at a time. Recently, I have been hospitalized 3 times with bacteria in the blood. I hope to get support from others like me."
Andrea S-Dirk
Canada
Living with PI
"I was first diagnosed with Lupus, then CVID in the fall of 2009 after battling the year of pneumonias. I gave up my career as a peds speech pathologist and home schooled our son in the interest of staying infection free. IVIG, antibiotics, and chronic pain and fatigue plagued me. Now with 3 years of weekly SCIG and I feel more alive."
Kristi Byrd
United States
Living with PI
"I was diagnosed with hypogammagoblinemia 41 years ago at the age of 6 at Duke University by Dr. Buckley. I started with IMIG shots in my hips and at the age of 15 started with IVIG until recently. In April 2015 I started on SubQ Hyqvia. I have recently became aware that there is a whole world of PI patients that I never knew about. Thanks"
Joanna Tierno
United States
Living with PI
"I have been living with primary immune deficiency disease for 44 years. In 2012 I survived super storm Sandy and have since added several new diagnoses including a rare skin disease called porokeratosis to my list of battles. Currently I have all my conditions well managed and I am finishing final repairs on our home. #zebrastrong"
Bill Eyl
United States
Living with PI
"8 pneumonias in less than two years, blood work confirmed below normal levels of immunoglobulins. Hematologist said "you have C.V.I.D." That was in 2008, I was 67. I started monthly infusions in his office but two and a half years ago, I had to serious pneumonias within 10 days. We changed the frequency from every 4 wks to every 3"
Angela Madl
United States
"I have been diagnosed with Hypogammaglobulinemia for the past 15 yrs. I had constant infections prior to diagnosis. I am 57 yrs, and this year, I have been on antibiotics 8 times for infections. This is in spite of IVIG replacement therapy done weekly sub-Q. I'm looking forward to feeling better. It's hard to avoid colds,flu,infections..."
Wim Van Dijk
Netherlands
Community supporter
"Because my son was diagnosed with an autoimmune disorder AND current medicine only targets the symptoms, we start looking for a more sustainable health approach. That is why we joined the organisation www.immunowell.com. This way we try to achieve immune fitness AND regain a sustainable health. This gives us hope for the future! ."
Annie Pienaar
South Africa
Community supporter
"I became committed to PID after our daughter, Anle Pienaar was diagnosed with Ataxia Telangiectasia in 2007. We joined PINSA (Primary Immunodeficiency Network of South Africa) I then started to dedicate my time to PINSA that the majority of PID patients in South Africa who are still not diagnosed, can be tested and TREATED, to live LIFE."
Annie Pienaar
South Africa
Community supporter
"I became committed to PID after our daughter, Anle Pienaar was diagnosed with Ataxia Telangiectasia in 2007. We joined PINSA (Primary Immunodeficiency Network of South Africa) I then started to dedicate my time to PINSA that the majority of PID patients in South Africa who are still not diagnosed, can be tested and TREATED, to live LIFE."
Chelsea Bolton
United States
"I was diagnosed w/ CVID while in collage, dealing w/ submitting finals while in a hospital bed. Then I was diagnosed w/ granulomatous lung disease. Now 5 yrs later, its alopecia. I say this all bc its the invisible truth I live w/. But its the reality of so many ppl w/ CVID, to raise awareness, we need to make the invisible seen and heard"
Abby W
United States
Living with PI
"I was officially diagnosed with CVID when I was 12 during the summer after my 6th grade year. I had been getting ear infections from when I was a baby till I was 10, and had tubes put in my ears 3 times. I had also battled with asthma since I was 3, getting pneumonia frequently from the age of 5-12 (roughly 3 times a year)"
Christina Stephens
United States
Living with PI
"I was diagnosed with CVID at the age of 38 following years of declining health. At the time I was diagnosed there were no support groups in my state. I contacted the IDF & began a support group for myself & others who struggle with Primary Immune Diseases. I hope for improved access to affordable healthcare for all chronically ill people."
Mason C
United States
Family carer
"This is our son Mason, he is 2. He has been very sick since birth with multiple hospital stays. Our journey for a diagnosis and treatment has been a challenge. Mason was diagnosed first with a MBL deficiency when he was 11 months old, and most recently we found out he has NK cell deficiency. His pneumonia titers and IGG are also now low."
Dawn Smith
United Kingdom
Living with PI
"I'm Dawn, living with CVID. My wish for the PI community is that everyone can have access to excellent diagnosis and treatment and that healthcare professionals and people with PI increasingly work together to coordinate treatment, care and research activity to limit impact on everyday life and maximise everyone's potential."
Emily
United States
Living with PI
"I was diagnosed with Partial IgA Deficiency a couple years ago. As a little girl, and to this day, I struggled with repeat viral infections, a chronic chest cough and gut problems as a result. Yet, despite the challenges, I am a successful college student and member of my school's cheer team. PI is tough, but I'm tougher."
Emily
United States
"I was officially diagnosed with IgA Deficiency nearly a year ago now after struggling with chronic viral infections, chronic chest cough, and gut issues since I was a little girl. PI can be tough, but, I consider myself lucky that I have the least serious type. I want to raise awareness so people can be properly diagnosed and treated."
Andrew Thomas
United Kingdom
Living with PI
"I was diagnosed with Hypogammaglobulinemia as a baby later identified as X-linked Hyper IGM Syndrome. Have long term health problems but am currently really well. Switched to sub-cut nearly 4 years ago which I do weekly. Work full-time and try to live life to the full. Volunteer with PID UK in order to support other PID patients."
Jamie Bunn
United States
Family carer
"My name is Jamie and my son Ashton has IgG4 immune deficiency. He was diagnosed around the age of 1 1/2. I didn't know much about any immune deficiency. Ashton stays sick a lot. The last 2 weeks he has caught micro plasma and then croup. He stays on antibiotics from November to spring break every year to try to help his immune system. "
Jerrina Rojo
United States
Living with PI
"I was diagnosed with Primary Immune Deficiency when I was 2 years old, but I had it ever since I was in my mom's belly. I am 16&the only one in my family with Primary Immune Deficiency. Throughout my life my doctors identified my PI as unknown, until last year. My doctors found out I have a rare PI called PASLI. "
Victoria Dyer
United Kingdom
Living with PI
"I was diagnosed with Hyper IgE due to STAT 3 mutation at 17 after 15 years of infection after infection. My mum and I lived in the doctors surgery or hospital. The difference diagnosis has made to my life is huge. Awareness about PID is paramount and Doctors need to start listening and testing more and sooner. "
Maria Parry
United Kingdom
Living with PI
"I'm 52 have four lovely children ( only 1 at home now) and work in a children's hospital ! Over the years I have had many chest and sinus infections and pneumonia. Being diagnosed was bitter sweet as at last I had an answer but I had to accept that I'm a patient now. I happily do sub q injections at home weekly and feel great!"
Roberta Pena
Argentina
Community supporter
"I'm the chair of the Argentine Association for PIDs, board of IPOPI but most important the mother of a young adult with CVID. We need to work very hard to reach that every child or adult with a PID receive an early diagnose and adequate treatment in order to improve the quality of life. Since 2005 I am trying to do this in Latin America. "
Maria Georgiou Charalambous
Cyprus
Living with PI
"I was diagnosed when I was 12 years with CVID. My daughter Margarita was diagnosed when she was 5 ½ months because I was aware of the symptoms. We both were diagnosed with a second rare disease BILU. We are the second family reported with CVID & BILU. We are both doing well we do our sub once a week. "
Tom Croall
United Kingdom
Family carer
"Tom was diagnosed with a PID at the age of 3. He was very poorly as a baby with one illness after another, including pneumonias and meningitis. Now we know what is wrong he is treated promptly and with regular IV Immunoglobulin replacement therapy he is doing really well. We are so proud of him!"
Amber Timmons
United States
Family carer
"My daughter Makenna started becoming ill when she was 18 months old. Three years and three Immunologists later, she was diagnosed with Hypogammaglobulinemia and started IvIg, which has been a lifesaver! She is my hero. "
Bryan Stiver
United States
Living with PI
"I was diagnosed with CVID in December of 2014 and have been doing IVIG every 4 weeks since then. It was challenging in the beginning, but it has settled into a routine. I am healthy and haven't had an upper respiratory illness since I began infusions. I have a baby girl due any day now and can't wait to grow our family! Stay Positive!"
Diane Broughton
United Kingdom
Living with PI
"I was diagnosed with CVID last year at the age of 60, and started SCIG. After 14 years of virtually continuous chest infections requiring high doses of oral steroids (with numerous side-effects) I have now had 8 months of good health. If only the diagnosis had been made sooner!"
Hannah Bruce
United Kingdom
Living with PI
"I was diagnosed with CVID as a baby with the diagnosis recently changed to Undiagnosed Immune Dysregulatory Disorder. I do subcutaneous infusions every two week. I now work for PID UK helping other patients offering support and information."
Heather
United Kingdom
Living with PI
"Living with PI was easy until I went to university. Since then I have been in ICU with septicaemia twice and had 18 other admissions with infection. Other students think I am being silly when I ask them to stay away when they are ill so they don't and I end up really ill. Its important to raise awareness to stop this happening."
Joanna Tierno
United States
Living with PI
"I lived with hypogammaglobulinemia over 2 decades without proper diagnosis or treatment. The impact of growing up sick without any help or support along with several shortages of immune globulin later in my life has inspired me to be an advocate for patients with primary immune deficiency diseases. "
Rembert Martine
France
Family carer
"Jules, 18 year-old on the right in the photo, was diagnosed with a Wiscott Aldrich at 2 months. She waited 6 years before they entered a bone marrow transplant, the donor is his dad. After 9 months and half of hospitalization in the service of Professor A. Fischer, we thank him and his team for this miracle :-)"
Celine Gand
France
Family carer
"My two little sons suffer from the immunity deficiency: the Bruton illness... They live like any other little boys except that they go to the hospital half a day every 3 week to receive their immunoglobulines... This ensure them to be protected and in good health. Before being diagnosted, my eldest son was sick all the time... "
Grosjean Virginie
France
Family carer
"In 2006 my daughter Eva was diagnosed with Shwachman Diamond Syndrome when she was only 2months! We were lucky to meat a doctor who knew this so rare syndrome.If not, the chance of survival of our daugther would have been compromised.The world PID week is an opportunity for me to disseminate information and advocate for a better diagnosis"
Joselynn Badman Mrs
United States
Living with PI
"I was initially diagnosed with PI in November 2000 and began IgG infusions, January 2001. Since receiving the IgG infusions, I have noticed ny susceptibility to various infections is low. I infuse weekly with Gammagard. I notice a marked improvement with the IgG infusions. I'm so glad my doctor got me on immunoglobulin therapy."
Molly McIntyre
United States
Living with PI
"My case is severe and was not diagnosed until I was 47. I have been sick my entire life.As a result of the late diagnosis, I am now in congestive heart failure, have 5 lung diseases and many other systemic problems. Even with SCIG, my docs have no hope.This is why we Must have more awareness! So people do not have to suffer as I have. "
Christine Bugnitz
United States
Living with PI
"Hi, I was diagnosed with CVID 2 1/2 years ago at age 51 after years of infections including several pneumonias. I have been fit all of my life and was a successful competitive high school and collegiate runner but was often sick with bad infections. Since starting IVIG I am illness free though just found out my IgM has dropped very low. "
Amy Patterson
United States
Family carer
"I am a caregiver to two boys with PI, my oldest Sean,age 10 who receives IVIG every 28 days for CVID ( Hypogam) & my youngest Christopher, age 4 who is in the initial stages of diagnosis with SAD. I know our medical research on PI is good but 8 + years to diagnose is too long for our children to wait...we need to do better, Pray 4 Cure!"
Laura
United States
Living with PI
"I have been living with PI for over twenty years. I have many complications from my PI which make daily life a challenge. Having a rare disease can be isolating, at times, so connecting with the worldwide PI community is a wonderful feeling! My hope for the future is increased awareness, better funding, and more research! "
Pergent Martine
France
Community supporter
"I am commited to the PID community for years : it is a fascinated field with so many dedicated people, patients, health care professionals, researchers, pharmaceutical companies, who are working together, with such success. But the vast majority of patients affected with a PID worldwide do not have access to their life saving treatment."
Florence Duheme
United States
Living with PI
"PID made a sudden, dramatic and nearly fatal entrance into my life. I very suddenly developed pneumonia with septic shock and nearly died. Repeated pneumonia over ensuing months led to diagnosis. Started IVIG and then switched to SCIG infusion. Happily have had no pneumonia or serious infection in more than 5 years!"
Jenny Gardner
United States
Living with PI
"I am so glad we have the opportunity during WPIW to let those who are not aware of our disease hear about it. Education and Awareness are key to getting on with your life after a life time of illness. If you believe you may have this disease. Please see a Doctor and ask for further testing. You know your body better than anyone."
Pam Mills
United States
Living with PI
"I was diagnosed with both CVID and HIES in January of 2010 after a severe case of pneumonia. After years of steroids, antibiotics, IVIG and Xoliar injections I am finally doing better. My doctors even work with me so that I could go to Burning Man in 2012 at Black Rock City. Anything is possible! "
Jean Arena
United States
Living with PI
"I have always not felt well my whole life, my mother thought I was a hypochondriac. As I got older, my health issues worsened. After an auto accident the trauma to my body was too much and I was diagnosed with a lot of autoimmune diseases. However, thanks to a very adept Dr., he figured out I had CVID. "
Josephine Hannigan
United States
"Josephine was diagnosed with selective IgA deficiency at about 3 years and two months. Josephine's repeat ear infections, sinus infections, and constant rash and fevers never seemed to go away. She had pnuemonia 2-3 times a year, hand foot mouth 3-4, and with every infection she needed repeated strong antibiotics. Still testing for others"
Karla A.
United States
Living with PI
"I was diagnosed with CVID at age 5 after being sick almost from birth. Attempts to treat it with shots of IgG failed. I began IVIG at 13, shortly after it was approved. I am now in my early 40s; though I do have lung damage & asthma from repeated infections, thanks to IVIG I have gone to college, married, worked & lived a "normal" life!"
Marian s
Australia
Family carer
"we care for our son with PID he was very sick for years undiagnosed. Eventually diagnosis & commenced treatment. School attendance improved, his fatigue decreased, less sick and downtime. He can now keep up with his peers. SCIG therapy has been a magic bullet and we thank all the blood donors for his life which with treatment is great! "
James & Callum (twins) Cooke
Australia
Living with PI
"We are 13 yo twins with CVID, diagnosed at 2 years. We started on ivig therapy in hospital but have been doing subcutaneous infusions at home for the past 2 years. We both have bronchiectasis and take daily antibiotics. Sometimes we go to hospital for iv antibiotics if our coughs dont clear. Otherwise we lead normal lives !"
Pearl Sims
Australia
Living with PI
"I have recently been diagnosed with PID and fibromyalgia. I expect to commence IVIG soon. I've had a lot of illness, got really down at times, with people thinking I was a hypochondriac, losing money because of time off work and not being able to go out and have fun. I've learnt to pace myself and enjoy the good times."
Amy Murphy
United States
Family carer
"Myself and both of my sons are IgA deficient. My husband works away all week leaving me to deal with all of the illnesses and appts. My employer thinks I misuse my sick time. I wish people knew what having this disease entailed so that they could understand how difficult everyday is in our home. I don't seek empathy, only understanding"
Massimo Prencipe
Italy
Living with PI
"In 1994 I received the first diagnosis of cvid. After a few months I started intravenous therapy at the 2° Policlinico di Napoli. After almost twenty years I've regained a normal life. This experience has made me stronger and more knowledgeable. I met so many new friends among patients and doctors. I'm President of AIP in south of Italy."
Jackie Murphy
Australia
Living with PI
"I was diagnosed with CVID over 6 years ago after 16 years of snowballing infections, both in severity and frequency. My GP didn't know that I had something seriously wrong with my immune system because he didn't know about PID. Both of my lungs are severely damaged but thankfully, thanks to IVIg and physio I have quality of life again."
Tamra L. Skahan
United States
Living with PI
"I was diagnosed with PI when I was 38 yrs old but it truly shattered my life 7 years before, after the birth of my son. Within six weeks I suffered sepsis and 30 days later, pneumonia, never getting off of high dose prednisone for what docs thought was severe asthma. People need to know about PI. WE MUST TELL THEM! "
Sonja Deeds
United States
"My 10 yr old grandson Jackson was diagnosed with CVID at around 9 months of age. He receives IVIG weekly, sub q. I pray that through research they will find a cure for this disease, but so grateful for the treatment research has brought now. Jackson is amazing young man, and we look forward to what the future holds for him."
Carmen Perez
Spain
Living with PI
"I suffer traps syndrome - all my family too. That makes you live like everybody but think in a different way. I am teacher and I would like to teach to young people how to live having a physical suffering but with a "normal life"."
Ricardo Pereira
Portugal
Living with PI
"Hey, my name is Ricardo and I'm a eclectic person very passionate about life. I born with X-Linked Agammaglobulinemia. Many people ask me what limitations do I have! I answer always with a smile. Smiles also lead to happiness and a good health so I try to live my life in that way."
Becky York
United States
Living with PI
"I am a 37 yo married mother of 3 with hypogammaglobulinemia/CVID. I have 1 child who has the same diagnosis and 1 that is a potential. Because I didnt start treatment at a young age I have organ damage. My family has been settled in a life revolving around my frequent hospitalizations sometimes including holidays. But I wouldnt trade it. "
Neacsu Stefania Larisa
Romania
Family carer
"My son has X linked Hyer IgM sindrome. He is 6 years old and is receiving "energy "(as we could explain him for understand) since he was 3 . This energy is IGV therapy one/month and helps him to stay away of infections. He is a happy and brave child, who's enjoying every second of his childhood, making us proud to be his parents"
Nuno Urbano
Portugal
"I was born with X-Linked Agammaglobulinemia, and I has always been very prone to develop infections. After many ups and downs during childhood and adolescence, my health got better when I started with the intravenous treatment and even better with the subcutaneous treatment. Today with 36 years old, I have a fully active lifestyle. "
Emma Owens
United Kingdom
Family carer
"After a bumpy start to life, incl.2 hospital stays & a stay in ICU, our son, Nate was diagnosed with XLA.We started IVIG immediately & life began again. Nate is a happy, brave 6 year old who is growing fast & starting to understand more about living with a PID. He is a remarkable,courageous little boy who we are very proud of."
Rita Cordeiro
Portugal
Living with PI
"Hello, I'm Rita. I live with PI since I was born. It has been a long way since then, passing by accepting the disease and learn how to live with it. It was truly hard when I was a teenager; I just could not accept the idea of living with it and the treatement. Now, I'm 21 and I have a very normal life with sub-cutaneous medication. "
Evelyn
United States
Living with PI
"As an adult, diagnosed tangentially to lymphacytic colitis. Treated via IVIG (four different products) in three states for 15 years so far. Although it has not helped my colon as at first hoped, I have had far fewer colds and upper respiratory infections than prior to diagnosis and treatment. Mostly great doctors and nurses. I am blessed."
Angela Lunn
United States
Living with PI
"I was diagnosed with PI in February of 2004. I had a B-Cell Deficiency,IGg2 and IGg4 Sub-class Deficiency. I also had Chromosome 6 Gene B-44 that had stopped working. My immune system began to decline rapidly and I developed Common Variable Immune Deficiency (CVID). I admitted to Mayo Hospital every 6 wks for 5 days for my infusion."
Carol Marzano
United States
Living with PI
"Three years ago I started to become ill and I was not recovering. I work in Pharma and went to many doctors. No one could tell me what I had, but I knew I was sick. An Immuno MD diagnosed me with PIDD. On IVIG twice monthly, but its a tough disease. Thanks to all my hero's who donate blood! "
Susan Watkins
United States
Living with PI
"I was thankfully diagnosed at the age of 58. Had another year passed without answers I would have been committed or dead. Looking back I realize how remarkably close I was to death. Why is it still so damn hard to figure this illness out before it kills you. Awareness will be my lifetime commitment from now on!! Spread your story."
Alana
United States
Family carer
"I'm Alana,and I will be 3 in June! I've been sick since I was 3 weeks old, and I began IVIG at 4 months old. Although I still have other medical conditions that cause complications, receiving IgG's has helped my Immunodeficiency. I am thankful for IgG's and the continued scientific research, lets help raise awareness to keep it going!"
Tarsha Makiej
United States
Living with PI
"Finally being diagnosed at the age of 38, with CVID was a relief. Since starting my IG treatments I have not gotten as sick or as often. I would get pneumonia at least twice a year every year, along with several other infections. To say my life has changed is an understatement! I don't worry as much about when or what I will get next!"
Brooke Smith
United States
Living with PI
"My 9 year old son and myself both have CVID. The support we get from the PI community is a tremendous help to us in everything we do. We are all one big family. Raising awareness is part of our passion so many more people can understand and the undiagnosed can become diagnosed to get treatment. Early treatment of these illnesses is key!"
Theresa Davis
United States
Living with PI
"In 2008 I was diagnosed with CVID after being through frequent hospitalizations for URI. It was then that my mother and daughter were also tested and diagnosed with a PIDD. We have been dealing with this disease for many years, but it took many years to get a diagnosis. Education is badly needed for proper diagnosis and treatment."
Gary Trump
United States
Family carer
"I have cared for 3 family members with CVID since April of 1993. Although my wife passed away in 1997, I work with and encourage my 2 adult sons to live a healthy lifestyle and to keep live-saving IVIG available at all times. I hope all nations support policies that promote the early diagnosis and treament of PIDD diseases."
Erin Beavers
United States
Living with PI
"I wasn't diagnosed with PI (specifically CVID) until I was 27, despite being sick my whole life. I struggled for so long against disbelieving doctors trying to to find answers because most doctors are simply unaware of PI. Increasing awareness of PI through World PI Week can save lives, and increase quality of life for PI patients!"
Carlota
Spain
Family carer
"I’m mother of a 3 years old boy. One year ago, after several hospital admissions my son was finally diagnosed with primary immunodeficiency. Since he’s treated with IVIG he feels much better. I’m member of ACADIP, the Catalan Association for PID. Patient organizations must fight for greater research and dissemination in PIDs!"
Charlene W.
United States
"Being diagnosed with CVID and receiving immune globulin therapy has increased my quality of life. It is the reason I am able to go back to college, and take on challenges my body could not have previously endured. In the past 5 years since I was first diagnosed and began treatment, my health has gradually but substantially improved."
Kim Duff
United States
Health professional
"My passion is helping undiagnosed patients with their options. Diagnosis is important because they can end up with long term effects from not receiving timely treatment. Then I recognized symptoms of PI in myself. I got treatment, but had to advocate for subcutaneous immunoglobulin due to my veins."
Maria João Mousinho
Portugal
Living with PI
"I was diagnosed at 35 years old, when my daughter was born. Since that moment, I was always very sick. But my story is also the story of my twin sister. She had 7 years without diagnosis. She was only diagnosed when I started to have the same symptoms. Since we do the treatment of immunoglobulin we started to have a normal life again."
Y.
Netherlands
Family carer
"I'm mother of a beautiful boy with diagnosis CVID. Luckily our son was quickly diagnosed and treatment with immunoglobulines is enough for him to have good quality of life. Every week he is getting his treatment at home. I'm also member of the board of Stichting voor Afweerstoornissen,the dutch foundation of PI. Awareness is our goal!"
Jessica
United States
Living with PI
"I was diagnosed with common variable immune deficiency (CVID) 2 years ago when I was 24 years old. It was finally after 2 sinus surgeries and I was still getting sinus infections that we knew something was wrong. I have a history of repeated infections since I was born, with more intense and frequent infections within the last 3 years."
Joanna Tierno
United States
Living with PI
"I was so happy when I was finally diagnosed with PI and started responding to immune globulin. Finding out about the Immune Deficiency Foundation and thousands of other patients just like me has also been life changing. I no longer feel I am fighting a disease all alone.. "
Janet Grab
South Africa
Family carer
"My daughter (now 4 years old) started getting sick when she was only 6 months old. After multiple admissions to hospital for pneumonia, ear & throat infections, failure to thrive and TB, she was diagnosed with primary immunodeficiency. She has now been on IVIG for 2 years and is doing much better, going to school and enjoying life!"
Cooper Peyton
United States
Living with PI
"My name is Cooper, I'm 4 years old. When I was two, I got very sick. Doctors have tested me for many immune deficiencies. NK cell and MBL deficiencies have been identified. After an EBV infection threatened my life, I started taking IVIG. I hope scientists can learn more about PI, so kids like me can grow up and have a healthier life."
William Hindin
United States
Living with PI
"Creating awareness and supporting others with PI is my life’s work and passion. If not for the IDF and individuals when I was first diagnosed with CVID, I would have been frightened, lost and depressed. Because of this support, I was able to learn to deal with PI in a constructive, positive way. With knowledge comes power. "
Ana Posea
Romania
Living with PI
"At age 24, my children were 4 & 9 and I couldn't even get out of bed. It was painful to see my children so helpless & sad. One day, my boy looked into my eyes and said; Mami, don’t die on me! At 32, I was diagnosed with CVID. With the right amount of imunoglobuline & my life became... alive! I am now an active mother with happy children!"
Teresa (Anonymous)
Spain
Health professional
"I'm an immunologist and paediatrician. I've seen many patients with sequelae because they weren't diagnosed on time. Mostly adults - doctors don't know PIDs and don't understand that a 'normal' adult could have one. We need A LOT MORE dissemination of information on PIDs to ALL DOCTORS! NMOs have an important role to play in this task. "
Judy Kozulak
United States
Living with PI
"PI wasn’t the mid-life crisis I prepared for! As my children grew, I had planned how to fill my free time. Instead, I was sick and exhausted. My CVID diagnosis in 2007 was confounding. I'd never heard of PI or CVID. Thanks to IDF, I was connected with other patients and had the opportunity to learn more about my illness and how to cope."
P (Anonymous)
Spain
Family carer
"We are parents of an XLA young man, now 34. He had a lot of respiratory infections in his first year, treated with antibiotics from different doctors; no one mentioned PID until a chemist, a friend of the family, made LG levels. With GG therapy he improved a lot. He graduated as an Economist and now is working at the University. "
J (Anonymous)
Spain
Family carer
"We are parents of an XLA young man, now 34. He had Leukemia at 15, which responded to therapy and no relapse has occurred! He does lots of sports which keeps him with a good respiratory funtion and high spirits! We are active members of AEDIP, and by dissemninating information on PIDs, we hope to improve diagnosis and therapy."
M (Anonymous)
Spain
Living with PI
"I am M, a 54 year old nurse with a long term CVID. I had infections in childhood, growing more severe after 12. At 21, I was diagnosed because I was working at a University Hospital in Madrid. However, at that time not many doctors knew about CVID. At 22, my son was also diagnosed with CVID, and I hope he will have a better life than me. "
Michael LeBien
United States
Living with PI
"Living with a PID has certainly affected my life and family. It motivated my Dad to start IPOPI, and be on the board of the IDF. Now that I'm a parent myself I can understand how difficult it must have been for them when I would go through periods of poor health. I'm so fortunate to have a supportive family to help through the hard times."
Jonas Busselen
Belgium
Living with PI
"In my life I've been taken to hospital many times - it's actually become a second home. I've suffered from: foot and mouth disease, shingles, chickenpox, pneumonia, pulmonary hemorrhage, esophageal bleeding, gastroscopy, surgery, heart rhythm disorders & depression. I hope my story raises awareness of PID."
Erin Leuschke
New Zealand
Community supporter
"As a mum to a toddler, I know how terrifying it is to have a sick child. From what I know about PI, it sounds like it is really important that there is an awareness of this in the community - otherwise our loved ones could go undiagnosed for years instead of receiving proper treatment. A great cause!"

Add your story

Linda
United States
Living with PI
"I finally was diagnosed with a primary immune deficiency disorder in mid-life, after spending years battling infections and developing asthma and undergoing sinus surgery. The use of a low-dose antibiotic daily has significantly improved my health and well-being overall. I am grateful to the helpful professionals I met in my journey."
Carmen
Belgium
Family carer
"My son was diagnosed with Bruton disease at the age of 2. We noticed that whenever we had gone out to a public place he got sick and had to go to hospital. We where lucky to find out so soon, he had no permanent damage to his organs. We have no doctors specialized at our region so I hope that this will become more known. "
Lauren and Chris
United Kingdom
Family carer
"Rowan was diagnosed with XLA just four months ago but in that short time the support and treatment we have received from Sheffield Children's Hospital and PID UK has been life changing for the whole family. Rowan now has weekly immunoglobulin infusions at home plus a daily dose of antibiotics and is a very happy and healthy two year old."
Saravanan
Malaysia
Living with PI
"I been falling sick very often since childhood. At 15, the puzzle was solved when blood test revealed I have Congenital Hypogammaglobulinemia after a massive pneumonia attack. Due to economic crisis in 1997 and irregular IVIG, I suffered more infection. After some surgeries and regular IVIG, I'm now able to lead a normal life. "
Demyana Kirollos
Egypt
Living with PI
"After years of suffering as a child from recurring chest infections and after numerous tests, I was diagnosed with CVID at the age of 9. Since then, I've been on treatment with immune supplements and steroids. I'm currently 24, have graduated college with high honors, started working and I enjoy a fairly healthy, unrestricted life. "
Stela
Romania
Family carer
"Subcutaneous immunoglobulin replacement therapy has made things much easier for us. Our son Daniel had subcutaneous infusions every two weeks at home, with no “scary” nurses or doctors trying to find a vein for the Iv treatment. His immune system is still slowly recovering but Daniel is now a very happy 4 year old boy. "
Maria
Cyprus
Living with PI
"Now, my primary Immunodeficiency is not my enemy, is my precious friend that I have to survive with it every day and being thankfully to the immunoglobulins treatments that makes me feel and thing what a wonderful life and world is out there!"
Brian
Canada
Living with PI
"Not long after that I began IVIg therapy and that fully changed my life. I had time between illnesses, I had energy and most of all I was given an opportunity to go play and be silly without worrying as much. Though it took a few years to get to a point where I felt healthy while on IVIg, eventually I got there and it was wonderful."
Glenda McGillivray
Canada
Family carer
"Immune globulin saved our daughter’s life and changed the course of her life, and that of our family. Kamille is now able to safely and successfully go to school, engage in the communityImmune globulin saved our daughter’s life and changed the course of her life, and that of our family. "
Joanna
United States
Living with PI
"I have been living with hypogammaglobulinemia for 45 years now. The first 2 decades of life I was untreated and at times dangerously sick. With treatment I have enjoyed a good quality of life. I only wish I had access to IG sooner! Early diagnosis and treatment is so important."
Otilia Stanga
Romania
Family carer
"My daughter (11 years old) was diagnosed with PID 3 years ago. She is doing great now, with monthly IVIG, but before that she went trough a lot of severe infections: chronic sinusitis, pneumonia, ear infections and even 2 episodes of sepsis. She also developed autoimmune diseases. I wish we could have access to subcutaneous IG in Romania!"
Donna Dunnican
United States
Living with PI
"I have been dealing with various illness for the past 10+ years. I finally found a doctor that had enough thought and compassion for me to test me.. I was finally diagnosed with CVID this year. We are still working out the kinks, as I am still getting sick, but I am a step closer to getting a little better. Not being sick every single day"
Joan Carles Añibarro Franch
Spain
Living with PI
"I was diagnosed when I'm 33 years, of IP, . In the years since diagnosis,we have advanced a lot in the IP community. We have also seen growing support from our Balear Association of Primaris Immunitaris Deficits ABADIP Thank immunologists has our doctors at University Hospital Espases professionalism and human touch to all of us.Thanks"
Joanna Tierno
United States
Living with PI
"I lived with hypogammaglobulinemia since I was 6 months old but my road to proper diagnosis and treatment was long, painful and sometimes terrifying. Treatment with immune globulin has been the best thing that has happened to me and has given me a good quality of life and a chance to grow older. "
Nicole Shearing
Australia
Living with PI
"34 years after having lived with constant sinus,ear,throat,chest,gut,bowel,bladder,kidney,skin infections and Golden Staph in my brain (Encephalitis anyone? It's such a joy!) as well as a placental abruption at 27 weeks I was diagnosed with CVID. The journey is long but together we're strong. Even stronger than Golden Staph! "
Xan
United States
Family carer
"We started our PI journey 22 years ago. Feeling alone and very unsure of the future for our beautiful daughter. She began IV infusions at age 3, then began SQ at age 11. So many scary things through the years, BUT we have survived, by helping to educate the medical and general population. She is NOW almost 23 and a Senior in College!"
Carla
United States
"I received gg shots from 7 mo - 9 yrs (bronchitis, pneumonia, asthma, allergies, GI). I’m 48 now. I’ve had 3 cases of shingles in 5 mos - I’ve been found to be IGG deficient and will begin IVIG infusions. I’ve urged my mother to get tested as she is the picture of PI. I’m thankful for all of the resources available today!"
Brandi Higgins
United States
Living with PI
"I started to have issues in 2007 after I returned from a cruise. I went to an ENT had abnormal results and that started my journey that opened my eyes to a whole new world. After 2 years of being really sick in Oct 2008 I was dx with CVID, Hypogamma. and Complete IgA Defi. I am on weekly treatment. Never give up #zebrastrong"
Ashlee BeGell
United States
Living with PI
"When I was 4, I was diagnosed with PI. My most profound memories as a child always involved the hospital and sickness. I have been on treatment now for about 16 years and have been the healthiest I have ever been. I go to UofA as an undergrad and plan on studying pharmacy as a grad student. My goal is to help children like me. "
Rebecca Lobell Kole
United States
Family carer
"The young man in the black jacket is Kole Lobell. He is 14 and lives with C.V.I.D and has been receiving monthly IVIG for almost 2 years. Today he will be starting weekly subcutaneous. Kole since birth was always sick and fighting to stay healthy. But he is a persevered man of God determined to have the Victory in the end. "
Kaylee Adolph
United States
Living with PI
"Kaylee is a very spunky 2.5 year old who was diagnosed with PI at 13 months old. In the year since Kaylees's diagnosis, we have learned a lot about the PI community and have watched the PI community and support in our area to grow and expand! Treatment has changed our lives in ways we never expected!"
Elizabeth Gibson
United States
Living with PI
"I got diagnosed with CVID at the age of 49 after YEARS of sinus infections, lung infections, and what seemed like living in the hospital for 6 years. It answered so many questions when I finally got diagnosed! IVIG has changed my life dramatically. I've got 7 months without being hospitalized and that's a personal record for me."
Jonah Kuhlman
United States
Living with PI
"I've been wrestling with repeated infections most of my life but wasn't diagnosed with CVID until 2011, just prior to my 50th birthday. Because my diagnosis came so late, much damage was already done. I began IVIG immediately after diagnosis but did not have much of a response. We must spread the word so that people are diagnosed quickly!"
Luka Fisher
United States
"Luka was born with a rare PI disease that may be unique to him. Fighting bravely like a lion, Luka endured 10 hospitalizations and a bone marrow transplant in his 21 months of life, passing away after complications. To honor Luka's spirit, his family established www.lukathelionfoundation.org to raise awareness of rare pediatric diseases. "
Nicki
United States
Living with PI
"I'm Nicki, 45 years old and have CVID. I have been getting immune globulin for 20+ years. The CVID has caused many other autoimmune diseases that I deal with every day. I take life one day at a time. Recently, I have been hospitalized 3 times with bacteria in the blood. I hope to get support from others like me."
Andrea S-Dirk
Canada
Living with PI
"I was first diagnosed with Lupus, then CVID in the fall of 2009 after battling the year of pneumonias. I gave up my career as a peds speech pathologist and home schooled our son in the interest of staying infection free. IVIG, antibiotics, and chronic pain and fatigue plagued me. Now with 3 years of weekly SCIG and I feel more alive."
Kristi Byrd
United States
Living with PI
"I was diagnosed with hypogammagoblinemia 41 years ago at the age of 6 at Duke University by Dr. Buckley. I started with IMIG shots in my hips and at the age of 15 started with IVIG until recently. In April 2015 I started on SubQ Hyqvia. I have recently became aware that there is a whole world of PI patients that I never knew about. Thanks"
Joanna Tierno
United States
Living with PI
"I have been living with primary immune deficiency disease for 44 years. In 2012 I survived super storm Sandy and have since added several new diagnoses including a rare skin disease called porokeratosis to my list of battles. Currently I have all my conditions well managed and I am finishing final repairs on our home. #zebrastrong"
Bill Eyl
United States
Living with PI
"8 pneumonias in less than two years, blood work confirmed below normal levels of immunoglobulins. Hematologist said "you have C.V.I.D." That was in 2008, I was 67. I started monthly infusions in his office but two and a half years ago, I had to serious pneumonias within 10 days. We changed the frequency from every 4 wks to every 3"
Angela Madl
United States
"I have been diagnosed with Hypogammaglobulinemia for the past 15 yrs. I had constant infections prior to diagnosis. I am 57 yrs, and this year, I have been on antibiotics 8 times for infections. This is in spite of IVIG replacement therapy done weekly sub-Q. I'm looking forward to feeling better. It's hard to avoid colds,flu,infections..."
Wim Van Dijk
Netherlands
Community supporter
"Because my son was diagnosed with an autoimmune disorder AND current medicine only targets the symptoms, we start looking for a more sustainable health approach. That is why we joined the organisation www.immunowell.com. This way we try to achieve immune fitness AND regain a sustainable health. This gives us hope for the future! ."
Annie Pienaar
South Africa
Community supporter
"I became committed to PID after our daughter, Anle Pienaar was diagnosed with Ataxia Telangiectasia in 2007. We joined PINSA (Primary Immunodeficiency Network of South Africa) I then started to dedicate my time to PINSA that the majority of PID patients in South Africa who are still not diagnosed, can be tested and TREATED, to live LIFE."
Annie Pienaar
South Africa
Community supporter
"I became committed to PID after our daughter, Anle Pienaar was diagnosed with Ataxia Telangiectasia in 2007. We joined PINSA (Primary Immunodeficiency Network of South Africa) I then started to dedicate my time to PINSA that the majority of PID patients in South Africa who are still not diagnosed, can be tested and TREATED, to live LIFE."
Chelsea Bolton
United States
"I was diagnosed w/ CVID while in collage, dealing w/ submitting finals while in a hospital bed. Then I was diagnosed w/ granulomatous lung disease. Now 5 yrs later, its alopecia. I say this all bc its the invisible truth I live w/. But its the reality of so many ppl w/ CVID, to raise awareness, we need to make the invisible seen and heard"
Abby W
United States
Living with PI
"I was officially diagnosed with CVID when I was 12 during the summer after my 6th grade year. I had been getting ear infections from when I was a baby till I was 10, and had tubes put in my ears 3 times. I had also battled with asthma since I was 3, getting pneumonia frequently from the age of 5-12 (roughly 3 times a year)"
Christina Stephens
United States
Living with PI
"I was diagnosed with CVID at the age of 38 following years of declining health. At the time I was diagnosed there were no support groups in my state. I contacted the IDF & began a support group for myself & others who struggle with Primary Immune Diseases. I hope for improved access to affordable healthcare for all chronically ill people."
Mason C
United States
Family carer
"This is our son Mason, he is 2. He has been very sick since birth with multiple hospital stays. Our journey for a diagnosis and treatment has been a challenge. Mason was diagnosed first with a MBL deficiency when he was 11 months old, and most recently we found out he has NK cell deficiency. His pneumonia titers and IGG are also now low."
Dawn Smith
United Kingdom
Living with PI
"I'm Dawn, living with CVID. My wish for the PI community is that everyone can have access to excellent diagnosis and treatment and that healthcare professionals and people with PI increasingly work together to coordinate treatment, care and research activity to limit impact on everyday life and maximise everyone's potential."
Emily
United States
Living with PI
"I was diagnosed with Partial IgA Deficiency a couple years ago. As a little girl, and to this day, I struggled with repeat viral infections, a chronic chest cough and gut problems as a result. Yet, despite the challenges, I am a successful college student and member of my school's cheer team. PI is tough, but I'm tougher."
Emily
United States
"I was officially diagnosed with IgA Deficiency nearly a year ago now after struggling with chronic viral infections, chronic chest cough, and gut issues since I was a little girl. PI can be tough, but, I consider myself lucky that I have the least serious type. I want to raise awareness so people can be properly diagnosed and treated."
Andrew Thomas
United Kingdom
Living with PI
"I was diagnosed with Hypogammaglobulinemia as a baby later identified as X-linked Hyper IGM Syndrome. Have long term health problems but am currently really well. Switched to sub-cut nearly 4 years ago which I do weekly. Work full-time and try to live life to the full. Volunteer with PID UK in order to support other PID patients."
Jamie Bunn
United States
Family carer
"My name is Jamie and my son Ashton has IgG4 immune deficiency. He was diagnosed around the age of 1 1/2. I didn't know much about any immune deficiency. Ashton stays sick a lot. The last 2 weeks he has caught micro plasma and then croup. He stays on antibiotics from November to spring break every year to try to help his immune system. "
Jerrina Rojo
United States
Living with PI
"I was diagnosed with Primary Immune Deficiency when I was 2 years old, but I had it ever since I was in my mom's belly. I am 16&the only one in my family with Primary Immune Deficiency. Throughout my life my doctors identified my PI as unknown, until last year. My doctors found out I have a rare PI called PASLI. "
Victoria Dyer
United Kingdom
Living with PI
"I was diagnosed with Hyper IgE due to STAT 3 mutation at 17 after 15 years of infection after infection. My mum and I lived in the doctors surgery or hospital. The difference diagnosis has made to my life is huge. Awareness about PID is paramount and Doctors need to start listening and testing more and sooner. "
Maria Parry
United Kingdom
Living with PI
"I'm 52 have four lovely children ( only 1 at home now) and work in a children's hospital ! Over the years I have had many chest and sinus infections and pneumonia. Being diagnosed was bitter sweet as at last I had an answer but I had to accept that I'm a patient now. I happily do sub q injections at home weekly and feel great!"
Roberta Pena
Argentina
Community supporter
"I'm the chair of the Argentine Association for PIDs, board of IPOPI but most important the mother of a young adult with CVID. We need to work very hard to reach that every child or adult with a PID receive an early diagnose and adequate treatment in order to improve the quality of life. Since 2005 I am trying to do this in Latin America. "
Maria Georgiou Charalambous
Cyprus
Living with PI
"I was diagnosed when I was 12 years with CVID. My daughter Margarita was diagnosed when she was 5 ½ months because I was aware of the symptoms. We both were diagnosed with a second rare disease BILU. We are the second family reported with CVID & BILU. We are both doing well we do our sub once a week. "
Tom Croall
United Kingdom
Family carer
"Tom was diagnosed with a PID at the age of 3. He was very poorly as a baby with one illness after another, including pneumonias and meningitis. Now we know what is wrong he is treated promptly and with regular IV Immunoglobulin replacement therapy he is doing really well. We are so proud of him!"
Amber Timmons
United States
Family carer
"My daughter Makenna started becoming ill when she was 18 months old. Three years and three Immunologists later, she was diagnosed with Hypogammaglobulinemia and started IvIg, which has been a lifesaver! She is my hero. "
Bryan Stiver
United States
Living with PI
"I was diagnosed with CVID in December of 2014 and have been doing IVIG every 4 weeks since then. It was challenging in the beginning, but it has settled into a routine. I am healthy and haven't had an upper respiratory illness since I began infusions. I have a baby girl due any day now and can't wait to grow our family! Stay Positive!"
Diane Broughton
United Kingdom
Living with PI
"I was diagnosed with CVID last year at the age of 60, and started SCIG. After 14 years of virtually continuous chest infections requiring high doses of oral steroids (with numerous side-effects) I have now had 8 months of good health. If only the diagnosis had been made sooner!"
Hannah Bruce
United Kingdom
Living with PI
"I was diagnosed with CVID as a baby with the diagnosis recently changed to Undiagnosed Immune Dysregulatory Disorder. I do subcutaneous infusions every two week. I now work for PID UK helping other patients offering support and information."
Heather
United Kingdom
Living with PI
"Living with PI was easy until I went to university. Since then I have been in ICU with septicaemia twice and had 18 other admissions with infection. Other students think I am being silly when I ask them to stay away when they are ill so they don't and I end up really ill. Its important to raise awareness to stop this happening."
Joanna Tierno
United States
Living with PI
"I lived with hypogammaglobulinemia over 2 decades without proper diagnosis or treatment. The impact of growing up sick without any help or support along with several shortages of immune globulin later in my life has inspired me to be an advocate for patients with primary immune deficiency diseases. "
Rembert Martine
France
Family carer
"Jules, 18 year-old on the right in the photo, was diagnosed with a Wiscott Aldrich at 2 months. She waited 6 years before they entered a bone marrow transplant, the donor is his dad. After 9 months and half of hospitalization in the service of Professor A. Fischer, we thank him and his team for this miracle :-)"
Celine Gand
France
Family carer
"My two little sons suffer from the immunity deficiency: the Bruton illness... They live like any other little boys except that they go to the hospital half a day every 3 week to receive their immunoglobulines... This ensure them to be protected and in good health. Before being diagnosted, my eldest son was sick all the time... "
Grosjean Virginie
France
Family carer
"In 2006 my daughter Eva was diagnosed with Shwachman Diamond Syndrome when she was only 2months! We were lucky to meat a doctor who knew this so rare syndrome.If not, the chance of survival of our daugther would have been compromised.The world PID week is an opportunity for me to disseminate information and advocate for a better diagnosis"
Joselynn Badman Mrs
United States
Living with PI
"I was initially diagnosed with PI in November 2000 and began IgG infusions, January 2001. Since receiving the IgG infusions, I have noticed ny susceptibility to various infections is low. I infuse weekly with Gammagard. I notice a marked improvement with the IgG infusions. I'm so glad my doctor got me on immunoglobulin therapy."
Molly McIntyre
United States
Living with PI
"My case is severe and was not diagnosed until I was 47. I have been sick my entire life.As a result of the late diagnosis, I am now in congestive heart failure, have 5 lung diseases and many other systemic problems. Even with SCIG, my docs have no hope.This is why we Must have more awareness! So people do not have to suffer as I have. "
Christine Bugnitz
United States
Living with PI
"Hi, I was diagnosed with CVID 2 1/2 years ago at age 51 after years of infections including several pneumonias. I have been fit all of my life and was a successful competitive high school and collegiate runner but was often sick with bad infections. Since starting IVIG I am illness free though just found out my IgM has dropped very low. "
Amy Patterson
United States
Family carer
"I am a caregiver to two boys with PI, my oldest Sean,age 10 who receives IVIG every 28 days for CVID ( Hypogam) & my youngest Christopher, age 4 who is in the initial stages of diagnosis with SAD. I know our medical research on PI is good but 8 + years to diagnose is too long for our children to wait...we need to do better, Pray 4 Cure!"
Laura
United States
Living with PI
"I have been living with PI for over twenty years. I have many complications from my PI which make daily life a challenge. Having a rare disease can be isolating, at times, so connecting with the worldwide PI community is a wonderful feeling! My hope for the future is increased awareness, better funding, and more research! "
Pergent Martine
France
Community supporter
"I am commited to the PID community for years : it is a fascinated field with so many dedicated people, patients, health care professionals, researchers, pharmaceutical companies, who are working together, with such success. But the vast majority of patients affected with a PID worldwide do not have access to their life saving treatment."
Florence Duheme
United States
Living with PI
"PID made a sudden, dramatic and nearly fatal entrance into my life. I very suddenly developed pneumonia with septic shock and nearly died. Repeated pneumonia over ensuing months led to diagnosis. Started IVIG and then switched to SCIG infusion. Happily have had no pneumonia or serious infection in more than 5 years!"
Jenny Gardner
United States
Living with PI
"I am so glad we have the opportunity during WPIW to let those who are not aware of our disease hear about it. Education and Awareness are key to getting on with your life after a life time of illness. If you believe you may have this disease. Please see a Doctor and ask for further testing. You know your body better than anyone."
Pam Mills
United States
Living with PI
"I was diagnosed with both CVID and HIES in January of 2010 after a severe case of pneumonia. After years of steroids, antibiotics, IVIG and Xoliar injections I am finally doing better. My doctors even work with me so that I could go to Burning Man in 2012 at Black Rock City. Anything is possible! "
Jean Arena
United States
Living with PI
"I have always not felt well my whole life, my mother thought I was a hypochondriac. As I got older, my health issues worsened. After an auto accident the trauma to my body was too much and I was diagnosed with a lot of autoimmune diseases. However, thanks to a very adept Dr., he figured out I had CVID. "
Josephine Hannigan
United States
"Josephine was diagnosed with selective IgA deficiency at about 3 years and two months. Josephine's repeat ear infections, sinus infections, and constant rash and fevers never seemed to go away. She had pnuemonia 2-3 times a year, hand foot mouth 3-4, and with every infection she needed repeated strong antibiotics. Still testing for others"
Karla A.
United States
Living with PI
"I was diagnosed with CVID at age 5 after being sick almost from birth. Attempts to treat it with shots of IgG failed. I began IVIG at 13, shortly after it was approved. I am now in my early 40s; though I do have lung damage & asthma from repeated infections, thanks to IVIG I have gone to college, married, worked & lived a "normal" life!"
Marian s
Australia
Family carer
"we care for our son with PID he was very sick for years undiagnosed. Eventually diagnosis & commenced treatment. School attendance improved, his fatigue decreased, less sick and downtime. He can now keep up with his peers. SCIG therapy has been a magic bullet and we thank all the blood donors for his life which with treatment is great! "
James & Callum (twins) Cooke
Australia
Living with PI
"We are 13 yo twins with CVID, diagnosed at 2 years. We started on ivig therapy in hospital but have been doing subcutaneous infusions at home for the past 2 years. We both have bronchiectasis and take daily antibiotics. Sometimes we go to hospital for iv antibiotics if our coughs dont clear. Otherwise we lead normal lives !"
Pearl Sims
Australia
Living with PI
"I have recently been diagnosed with PID and fibromyalgia. I expect to commence IVIG soon. I've had a lot of illness, got really down at times, with people thinking I was a hypochondriac, losing money because of time off work and not being able to go out and have fun. I've learnt to pace myself and enjoy the good times."
Amy Murphy
United States
Family carer
"Myself and both of my sons are IgA deficient. My husband works away all week leaving me to deal with all of the illnesses and appts. My employer thinks I misuse my sick time. I wish people knew what having this disease entailed so that they could understand how difficult everyday is in our home. I don't seek empathy, only understanding"
Massimo Prencipe
Italy
Living with PI
"In 1994 I received the first diagnosis of cvid. After a few months I started intravenous therapy at the 2° Policlinico di Napoli. After almost twenty years I've regained a normal life. This experience has made me stronger and more knowledgeable. I met so many new friends among patients and doctors. I'm President of AIP in south of Italy."
Jackie Murphy
Australia
Living with PI
"I was diagnosed with CVID over 6 years ago after 16 years of snowballing infections, both in severity and frequency. My GP didn't know that I had something seriously wrong with my immune system because he didn't know about PID. Both of my lungs are severely damaged but thankfully, thanks to IVIg and physio I have quality of life again."
Tamra L. Skahan
United States
Living with PI
"I was diagnosed with PI when I was 38 yrs old but it truly shattered my life 7 years before, after the birth of my son. Within six weeks I suffered sepsis and 30 days later, pneumonia, never getting off of high dose prednisone for what docs thought was severe asthma. People need to know about PI. WE MUST TELL THEM! "
Sonja Deeds
United States
"My 10 yr old grandson Jackson was diagnosed with CVID at around 9 months of age. He receives IVIG weekly, sub q. I pray that through research they will find a cure for this disease, but so grateful for the treatment research has brought now. Jackson is amazing young man, and we look forward to what the future holds for him."
Carmen Perez
Spain
Living with PI
"I suffer traps syndrome - all my family too. That makes you live like everybody but think in a different way. I am teacher and I would like to teach to young people how to live having a physical suffering but with a "normal life"."
Ricardo Pereira
Portugal
Living with PI
"Hey, my name is Ricardo and I'm a eclectic person very passionate about life. I born with X-Linked Agammaglobulinemia. Many people ask me what limitations do I have! I answer always with a smile. Smiles also lead to happiness and a good health so I try to live my life in that way."
Becky York
United States
Living with PI
"I am a 37 yo married mother of 3 with hypogammaglobulinemia/CVID. I have 1 child who has the same diagnosis and 1 that is a potential. Because I didnt start treatment at a young age I have organ damage. My family has been settled in a life revolving around my frequent hospitalizations sometimes including holidays. But I wouldnt trade it. "
Neacsu Stefania Larisa
Romania
Family carer
"My son has X linked Hyer IgM sindrome. He is 6 years old and is receiving "energy "(as we could explain him for understand) since he was 3 . This energy is IGV therapy one/month and helps him to stay away of infections. He is a happy and brave child, who's enjoying every second of his childhood, making us proud to be his parents"
Nuno Urbano
Portugal
"I was born with X-Linked Agammaglobulinemia, and I has always been very prone to develop infections. After many ups and downs during childhood and adolescence, my health got better when I started with the intravenous treatment and even better with the subcutaneous treatment. Today with 36 years old, I have a fully active lifestyle. "
Emma Owens
United Kingdom
Family carer
"After a bumpy start to life, incl.2 hospital stays & a stay in ICU, our son, Nate was diagnosed with XLA.We started IVIG immediately & life began again. Nate is a happy, brave 6 year old who is growing fast & starting to understand more about living with a PID. He is a remarkable,courageous little boy who we are very proud of."
Rita Cordeiro
Portugal
Living with PI
"Hello, I'm Rita. I live with PI since I was born. It has been a long way since then, passing by accepting the disease and learn how to live with it. It was truly hard when I was a teenager; I just could not accept the idea of living with it and the treatement. Now, I'm 21 and I have a very normal life with sub-cutaneous medication. "
Evelyn
United States
Living with PI
"As an adult, diagnosed tangentially to lymphacytic colitis. Treated via IVIG (four different products) in three states for 15 years so far. Although it has not helped my colon as at first hoped, I have had far fewer colds and upper respiratory infections than prior to diagnosis and treatment. Mostly great doctors and nurses. I am blessed."
Angela Lunn
United States
Living with PI
"I was diagnosed with PI in February of 2004. I had a B-Cell Deficiency,IGg2 and IGg4 Sub-class Deficiency. I also had Chromosome 6 Gene B-44 that had stopped working. My immune system began to decline rapidly and I developed Common Variable Immune Deficiency (CVID). I admitted to Mayo Hospital every 6 wks for 5 days for my infusion."
Carol Marzano
United States
Living with PI
"Three years ago I started to become ill and I was not recovering. I work in Pharma and went to many doctors. No one could tell me what I had, but I knew I was sick. An Immuno MD diagnosed me with PIDD. On IVIG twice monthly, but its a tough disease. Thanks to all my hero's who donate blood! "
Susan Watkins
United States
Living with PI
"I was thankfully diagnosed at the age of 58. Had another year passed without answers I would have been committed or dead. Looking back I realize how remarkably close I was to death. Why is it still so damn hard to figure this illness out before it kills you. Awareness will be my lifetime commitment from now on!! Spread your story."
Alana
United States
Family carer
"I'm Alana,and I will be 3 in June! I've been sick since I was 3 weeks old, and I began IVIG at 4 months old. Although I still have other medical conditions that cause complications, receiving IgG's has helped my Immunodeficiency. I am thankful for IgG's and the continued scientific research, lets help raise awareness to keep it going!"
Tarsha Makiej
United States
Living with PI
"Finally being diagnosed at the age of 38, with CVID was a relief. Since starting my IG treatments I have not gotten as sick or as often. I would get pneumonia at least twice a year every year, along with several other infections. To say my life has changed is an understatement! I don't worry as much about when or what I will get next!"
Brooke Smith
United States
Living with PI
"My 9 year old son and myself both have CVID. The support we get from the PI community is a tremendous help to us in everything we do. We are all one big family. Raising awareness is part of our passion so many more people can understand and the undiagnosed can become diagnosed to get treatment. Early treatment of these illnesses is key!"
Theresa Davis
United States
Living with PI
"In 2008 I was diagnosed with CVID after being through frequent hospitalizations for URI. It was then that my mother and daughter were also tested and diagnosed with a PIDD. We have been dealing with this disease for many years, but it took many years to get a diagnosis. Education is badly needed for proper diagnosis and treatment."
Gary Trump
United States
Family carer
"I have cared for 3 family members with CVID since April of 1993. Although my wife passed away in 1997, I work with and encourage my 2 adult sons to live a healthy lifestyle and to keep live-saving IVIG available at all times. I hope all nations support policies that promote the early diagnosis and treament of PIDD diseases."
Erin Beavers
United States
Living with PI
"I wasn't diagnosed with PI (specifically CVID) until I was 27, despite being sick my whole life. I struggled for so long against disbelieving doctors trying to to find answers because most doctors are simply unaware of PI. Increasing awareness of PI through World PI Week can save lives, and increase quality of life for PI patients!"
Carlota
Spain
Family carer
"I’m mother of a 3 years old boy. One year ago, after several hospital admissions my son was finally diagnosed with primary immunodeficiency. Since he’s treated with IVIG he feels much better. I’m member of ACADIP, the Catalan Association for PID. Patient organizations must fight for greater research and dissemination in PIDs!"
Charlene W.
United States
"Being diagnosed with CVID and receiving immune globulin therapy has increased my quality of life. It is the reason I am able to go back to college, and take on challenges my body could not have previously endured. In the past 5 years since I was first diagnosed and began treatment, my health has gradually but substantially improved."
Kim Duff
United States
Health professional
"My passion is helping undiagnosed patients with their options. Diagnosis is important because they can end up with long term effects from not receiving timely treatment. Then I recognized symptoms of PI in myself. I got treatment, but had to advocate for subcutaneous immunoglobulin due to my veins."
Maria João Mousinho
Portugal
Living with PI
"I was diagnosed at 35 years old, when my daughter was born. Since that moment, I was always very sick. But my story is also the story of my twin sister. She had 7 years without diagnosis. She was only diagnosed when I started to have the same symptoms. Since we do the treatment of immunoglobulin we started to have a normal life again."
Y.
Netherlands
Family carer
"I'm mother of a beautiful boy with diagnosis CVID. Luckily our son was quickly diagnosed and treatment with immunoglobulines is enough for him to have good quality of life. Every week he is getting his treatment at home. I'm also member of the board of Stichting voor Afweerstoornissen,the dutch foundation of PI. Awareness is our goal!"
Jessica
United States
Living with PI
"I was diagnosed with common variable immune deficiency (CVID) 2 years ago when I was 24 years old. It was finally after 2 sinus surgeries and I was still getting sinus infections that we knew something was wrong. I have a history of repeated infections since I was born, with more intense and frequent infections within the last 3 years."
Joanna Tierno
United States
Living with PI
"I was so happy when I was finally diagnosed with PI and started responding to immune globulin. Finding out about the Immune Deficiency Foundation and thousands of other patients just like me has also been life changing. I no longer feel I am fighting a disease all alone.. "
Janet Grab
South Africa
Family carer
"My daughter (now 4 years old) started getting sick when she was only 6 months old. After multiple admissions to hospital for pneumonia, ear & throat infections, failure to thrive and TB, she was diagnosed with primary immunodeficiency. She has now been on IVIG for 2 years and is doing much better, going to school and enjoying life!"
Cooper Peyton
United States
Living with PI
"My name is Cooper, I'm 4 years old. When I was two, I got very sick. Doctors have tested me for many immune deficiencies. NK cell and MBL deficiencies have been identified. After an EBV infection threatened my life, I started taking IVIG. I hope scientists can learn more about PI, so kids like me can grow up and have a healthier life."
William Hindin
United States
Living with PI
"Creating awareness and supporting others with PI is my life’s work and passion. If not for the IDF and individuals when I was first diagnosed with CVID, I would have been frightened, lost and depressed. Because of this support, I was able to learn to deal with PI in a constructive, positive way. With knowledge comes power. "
Ana Posea
Romania
Living with PI
"At age 24, my children were 4 & 9 and I couldn't even get out of bed. It was painful to see my children so helpless & sad. One day, my boy looked into my eyes and said; Mami, don’t die on me! At 32, I was diagnosed with CVID. With the right amount of imunoglobuline & my life became... alive! I am now an active mother with happy children!"
Teresa (Anonymous)
Spain
Health professional
"I'm an immunologist and paediatrician. I've seen many patients with sequelae because they weren't diagnosed on time. Mostly adults - doctors don't know PIDs and don't understand that a 'normal' adult could have one. We need A LOT MORE dissemination of information on PIDs to ALL DOCTORS! NMOs have an important role to play in this task. "
Judy Kozulak
United States
Living with PI
"PI wasn’t the mid-life crisis I prepared for! As my children grew, I had planned how to fill my free time. Instead, I was sick and exhausted. My CVID diagnosis in 2007 was confounding. I'd never heard of PI or CVID. Thanks to IDF, I was connected with other patients and had the opportunity to learn more about my illness and how to cope."
P (Anonymous)
Spain
Family carer
"We are parents of an XLA young man, now 34. He had a lot of respiratory infections in his first year, treated with antibiotics from different doctors; no one mentioned PID until a chemist, a friend of the family, made LG levels. With GG therapy he improved a lot. He graduated as an Economist and now is working at the University. "
J (Anonymous)
Spain
Family carer
"We are parents of an XLA young man, now 34. He had Leukemia at 15, which responded to therapy and no relapse has occurred! He does lots of sports which keeps him with a good respiratory funtion and high spirits! We are active members of AEDIP, and by dissemninating information on PIDs, we hope to improve diagnosis and therapy."
M (Anonymous)
Spain
Living with PI
"I am M, a 54 year old nurse with a long term CVID. I had infections in childhood, growing more severe after 12. At 21, I was diagnosed because I was working at a University Hospital in Madrid. However, at that time not many doctors knew about CVID. At 22, my son was also diagnosed with CVID, and I hope he will have a better life than me. "
Michael LeBien
United States
Living with PI
"Living with a PID has certainly affected my life and family. It motivated my Dad to start IPOPI, and be on the board of the IDF. Now that I'm a parent myself I can understand how difficult it must have been for them when I would go through periods of poor health. I'm so fortunate to have a supportive family to help through the hard times."
Jonas Busselen
Belgium
Living with PI
"In my life I've been taken to hospital many times - it's actually become a second home. I've suffered from: foot and mouth disease, shingles, chickenpox, pneumonia, pulmonary hemorrhage, esophageal bleeding, gastroscopy, surgery, heart rhythm disorders & depression. I hope my story raises awareness of PID."
Erin Leuschke
New Zealand
Community supporter
"As a mum to a toddler, I know how terrifying it is to have a sick child. From what I know about PI, it sounds like it is really important that there is an awareness of this in the community - otherwise our loved ones could go undiagnosed for years instead of receiving proper treatment. A great cause!"
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