I was always treated routinely but never investigated for an underlying condition
I was even sent to a clinical psychologist to see if I was making myself ill. After writing lots of letters to my local hospital, I was tested by a viral specialist, who discovered I had an immune deficiency.
I began to be treated at the Edward Jenner Unit at Gloucestershire Royal Hospital, where I was put on intravenous immunoglobulin
My health didn’t improve, however, so I referred myself to the immunology department at the John Radcliffe Hospital, Oxford. There, I was seen by Helen Chapel and her team and put on subcutaneous immunotherapy, which I’ve been on ever since. My health has greatly improved, although I do suffer from stomach-related complications and recurrent infections from time to time.
At first, I found it difficult coming to terms with having CVID
It was the lifelong prognosis that made it feel like CVID had snatched my life away, but I think that was due to the shock and trauma of getting diagnosed lingering behind me. Having CVID used to hold me back but now I make the condition fit into my life and not the other way around.
I’ve moved forward with my life. I am married to someone who is supportive, and we are expecting a baby soon, which is something I never thought I would achieve, let alone a sense of normality to my life.
My family found my condition incredibily difficult to adjust to as getting any sort of diagnosis was so hard.
But now they’ve learnt to live with it and are an amazing support.
My wish list for helping PID patients
- More money to research different treatments.
- Better information provided to all medical practitioners.
- Protection from discrimination in the workplace.
- Easy-to-access financial support for those unable to work due to the condition.
- Clearer ways to highlight patients’ immune conditions in their medical records, so medical teams have greater awareness when a patient is admitted to hospital.
My advice to people starting out on their PID journey is don’t be afraid to get as much information as you can
CVID can feel all-consuming to start with but you can make it work around your life so that you can achieve as much as possible. Be patient and take care of yourself, and with the right treatment you will get stronger.
PID UK have been a great support. I’ve used them to inform medical professionals about my condition, get the correct advice and connect with other CVID patients.