Patient stories

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

My name is Danielle, but everyone calls me Dani. I am 45 years old and was diagnosed with common variable immune deficiency (CVID) in early 2018 and then granulomatous-lymphocytic interstitial lung disease (GLILD) in August 2019. "I found the exhaustion and the pain overwhelming. Problems I thought I had dealt

Hi, I’m Jen. I was diagnosed with hypogammaglobulinemia when I was 15. "I work full time as a property consultant and trying to stay healthy and avoid getting ill while living and working in London is not always easy." I became ill with pneumonia and a

My name is Elisabeth and I have a mild form of PID. I have no mannose-binding lectin, low immunoglobulin M but normal immunoglobulin G levels. "PID UK has been fantastic in terms of the clear and concise information it has sent out to the PID community during the pandemic. Having

My name is Alison and I have IgA deficiency and DiGeorge syndrome (22q 11 deletion). "The doctor who took my blood sample was confident that the results would come back negative. The results came back positive. I cried, laughed and hugged my family." During a medical

My name is Ellie Jayne Taylor and I have mannose-binding lectin (MBL) deficiency. I wasn’t aware of the term ‘immune deficiency’ until I was diagnosed, in November 2012, while battling sepsis. "Yes, it’s important to know what condition you have but it’s also important to remember you are not your

Hi, we are twin sisters Jodi and Jessi Ecclestone. We both have common variable immune deficiency (CVID) and lung disease (bronchietasis)‚ plus the associated problems caused by recurrent infections, which other people who have CVID will know all about.. "PID UK has supported us in coping with CVID but has

My name is Claire and I have common variable immune deficiency (CVID). "Some days I'm exhausted and I try to balance things, but it's hard. I have found a lot of people don't understand or know much about CVID; more awareness is necessary." I had various

My name is Simon Gach and I have XLA (X-linked agammaglobulinemia). The condition means that my pre-B cells do not mature, so I have no natural resistance to certain bacterial infections, especially pneumonia-type conditions. "My advice for anyone starting their journey would be to ask questions and become knowledgeable about