Monthly Archives: March 2021

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.

My name is Kirsty Darby, I’m 39 and from Cheltenham. I was diagnosed with common variable immune deficiency (CVID) at the age of 19 after many years of illness, starting when I was about eight years old. "CVID can feel all-consuming to start with but you can make it work

Hi, my name is Richard. I am 71 and was diagnosed with common variable immune deficiency (CVID) in 1992. "Listen to advice from professionals and others with the same diagnosis as you. What they have to say will help you make up your mind about the best way forward for