Raising awareness, diagnosis and treatment of PI together

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!"
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!"