My name is Emma and I was diagnosed with common variable immune deficiency aged 16. This is my story.
I had my tonsils removed when I was 16, owing to the continuous infections I had throughout my childhood that wouldn’t shift with antibiotics. Then, I contracted pneumonia, which is rare at that age, but I was fortunate to be seen by an immunology specialist at the hospital. After a series of tests, I was diagnosed with common variable immune deficiency (CVID). My life had changed forever.
At this point, I couldn’t even look at a needle, let alone inject myself. The immunology staff at Addenbrooke’s Hospital helped me and I received counselling to tackle my resistance to injecting. I was put on weekly subcutaneous infusions.
Fast-forward 15 years and, aged 32, I am an active, career-driven woman and I don’t let my condition hold me back. I’ve had breakthrough infections and been hospitalised on a few occasions, but I’ve always pushed through. I am so grateful for the support of my family and friends, and to people in a similar situation who have shared their experiences on the Immunodeficiency UK website. CVID is part of who I am, and I manage it rather than letting it manage me.
To somebody who is newly diagnosed with CVID I would say: You are not alone. Lots of people from all walks of life are living with the condition. CVID doesn’t have to have a negative effect on your life. If anything, it makes you unique. Talk openly to your friends and family, and visit the Immunodeficiency UK website for advice and guidance – you’ll find a great online community there. Seek therapy if you think it would help.
