IPIA will love to hear your story. If you are a patient with a Primary Immunodeficiency please send us your story. All stories will be posted in our web page. Its important to share our stories. Sharing is caring, if we stay silent we can not make awareness or hope for new treatments. How many […]
“How I Got My Home Funding”
Orlagh Woods- CVID my story …. “How I Got My Home Funding” I’m now almost 22 and I’m still figuring things out as I go, especially when it comes to having CVID. Adapting to having a new normal was very hard. I spent majority of the past few years fighting with TDs, (members of Dàil […]
Oliver and Luke’s journey through their Bone Marrow Transplants at NewCastle-UK
Oliver and Luke’s journey through their Bone Marrow Transplants at NewCastle-UK Final Diagnose : Zinc Transporter Cell Defect My name is Colin and I’m here to share our family’s story on our 2 children Oliver and Luke’s journey through their bone marrow transplants in 2012 and 2013. I’ve tried to summarize this story into a […]
Orlagh Woods- CVID my story
Orlagh Woods- CVID my story I wouldn’t say my diagnoses of CVIID was a ‘normal’ diagnoses. I wasn’t constantly sick when I was young, or on antibiotics every other week. When I was 14 I was brought to hospital after having a blood test done by my gp that resulted in me being diagnosed with […]
Multiple Autoimmune Diseases – Ruben’s age 3 story
Ruben’s Story age 3 Autoimmune Diseases Thanks to Natalie, Ruben’s mother for sharing her little boy Ruben’s age 3 story. Ruben has multiple autoimmune diseases that affect his lungs, liver and blood. They are all live threaten and he has spent much of his life in the hospital with a couple of […]
YOUR STORY WILL CONTRIBUTE TO BRING HOPE AND INSPIRATION TO OTHER PI PATIENTS
IPIA will love to hear your story. If you are a patient with a Primary Immunodeficiency please send us your story. All stories will be posted in our web page. Its important to share our stories. Sharing is caring, if we stay silent we can not make awareness or hope for new treatments. How many […]
Wiskott-Aldrich Syndrome (WAS)
Wiskott-Aldrich Syndrome (WAS) The story of an Irish 5-year patient with WAS a rare genetic disease, a primary immune deficiency disease (PIDD). Keelan was 11 months old when he was diagnosed with WAS, an abnormal Immune System disease characterized by Eczema, low platelet count and a reduced ability to form blood clots. Treatment is […]
David Syndrome
This is the story of a teenager that lives in Ireland, that was born in a country without the possibility of a diagnose. He was then diagnose with CVID and a few years later when sequency was available he had his final diagnose:”DAVID Syndrome”. With this new diagnose he is now receiving a complementary treatment […]
