Patient stories

Shared by Claire, mum to Victoria who is 17 years old. Victoria’s journey to a diagnosis has been a long one and she was diagnosed with Hyper IgE syndrome only a few months ago. "If you can, take you child to an immunologist. There is a reason your child is having so many infections.

In 2017, 14-month-old Harlan Brierley became critically ill with sepsis, secondary to a pneumonia and tonsillitis. His parents suspected he had a PID. Here they recall the story of Harlan’s diagnosis of a very rare PID called ICF syndrome (The Immunodeficiency, Centromeric region instability, Facial anomalies) syndrome. "He is so

Harry, Lyndsey and their family and friends recently completed a Virtual 10K in aid of PID UK "Many treatments have been difficult and we have all ended up in tears." Harry was diagnosed with XLA at Craigavon Area Hospital when he was two days old I

Omer was born without any problems. From birth to nine months, he was a happy and healthy baby. Then, he developed pneumococcal HUS, a condition caused by bacteria. The bacteria shut down both of Omer's kidneys, and he was put on dialysis. "My advice to any other parents who have

My name is Peta and I am 60 years old and was diagnosed with Common Variable Immune Deficiency (CVID), aged 57. "I have lost count of the times I had pneumonia, flu, chest infection, gastroenteritis and also asthma attacks that ended up in A and E."

Hi my name is Fiona, I am 56 years of age and I was diagnosed with the primary immunodeficiency (PID) IgG2 subclass deficiency when I was 31 years old. My brother has also had a diagnosis of IgG subclass deficiency. "My infections continue but are fortunately they are not serious

My name is Rachel, I am 19 years old and was diagnosed when I was seven with a type of PID called common variable immune deficiency (CVID), which is sometimes called primary antibody deficiency. My mother also has CVID but a slightly different version. "Having the correct diagnosis and treatment

Hello! My name is Hannah and I am 24 years old. I have had a confirmed diagnosis of common variable immune deficiency (CVID) since I was six years old, although I have been on immunoglobulin since I was two. No one else in my family has a PID. "I found

My name is Diane, I am 50 and was diagnosed with common variable immune deficiency (CVID) when I was 45. My 19-year-old daughter, Rachel, also has CVID but a slightly different version. "My advice to someone who has just been diagnosed with CVID is to take the best possible care

Hi! I’m 28 and from Newcastle upon Tyne. I was diagnosed with CVID when I was 13 (just before my GCSEs). "I never thought I’d run the Great North Run but this year I’ve decided I’m not going to let my CVID hold me back from doing the event. I