Patient stories

My name is Michael. I am 39 years old and have Wiskott–Aldrich syndrome  (WAS), which was diagnosed when I was three months old. "It is important to maintain a positive attitude and not let your condition prevent you from achieving your full potential. Some things will be more of a

My name is Suzi Arnold, I am 43 and was diagnosed with common variable immune deficiency (CVID) when I was 39. I had a normal, healthy childhood. I spent most of my time outdoors, climbing trees, paddling in the local stream and playing hide & seek. "Once I’d received a

My name is John, I am 33 years old and was diagnosed with XLA when I was nearly eight years old. My younger brother was diagnosed when he was four years old. XLA has a sex-linked pattern of inheritance and usually affects only males. XLA affects the body’s ability to fight infection.

Hello everyone, I was diagnosed with hypogammaglobulinemia seven years ago after 54 years of trying to get to the causes of my ill-health. "I’ve got a better quality of life now and not getting so many infections and wished this could have been diagnosed earlier in my life, or at

My name is Jonathan and I am 35 years old. I was diagnosed with common variable immune deficiency (CVID) nearly two years ago. "My wish would be for a better understanding of the condition, primarily to speed up diagnosis." The long road to diagnosis I’ve had

My name is Alison, I am 32 years old and I suffer from a rare genetic defect that manifests itself in autoimmunity and immunodeficiency. The specific disorder I have was only recognised a few years ago and I received my diagnosis shortly after. "Managing a rare disease can be difficult because there are no

My name is Kirsty and I am 29 years old. I was diagnosed with primary immunodeficiency (PID) in December 2017. Like many people with chronic illness, I can’t tell you when it started – it just crept up on me. "It took me a long time to be diagnosed, but

My name is Hannah and I am 22 years old. I was diagnosed with unclassified hypogammaglobulinaemia when I was 17, but I am likely to have suffered since birth. Living with a PID has been difficult at times, but it has made me stronger as a person, more understanding towards others and led me

Hi! I’m Jenny, a 55-year-old, Yorkshire-born mother of two grown-up sons, who has common variable immunodeficiency (CVID) and immunoglobulin (Ig) treatment for it. I consider myself fit and healthy, and able to manage most things, from my immune-suppressed context. "I have lived with uncertainty all my life and am never

My name is Charlotte and I am an author, associate lecturer and PhD student. I have mannose-binding lectin (MBL) deficiency, which is a condition that affects my immune system. I also have a blood disorder that makes me anaemic. I am prone to lots of infections, have damage to my lungs and bladder, and am frequently tired.