My name is Graeme, I’m 38 years old and I’m deaf. I was diagnosed with the primary immunodeficiency common variable immune deficiency at just two years old, although my journey with the condition began much earlier. Looking back, the road to diagnosis was long and filled with uncertainty, but I’ve learnt to manage the condition and I hope my story can help others do the same.
The early signs
I was constantly unwell from a very young age. I had frequent chest infections and contracted meningitis. My parents instinctively knew something wasn’t right. It took 18 months of hospital visits, tests and worry before we finally had a diagnosis.
It was a difficult time for my family, but receiving that diagnosis was the first step towards getting the treatment I needed.
Life with immunodeficiency
I receive weekly immunoglobulin (IG) infusions, which have become a regular part of my routine. While it can be a bit of a juggle to set aside time each week for the infusions – especially with work – it’s something I’ve adapted to.
That said, one of the ongoing challenges is arranging the delivery of my supplies, which has recently become more stressful than it should be. Having a reliable supply is crucial, so when things go wrong, it can really disrupt my routine and peace of mind.
Adjusting to work and daily life
The biggest change I’ve had to make at work is blocking out time each week for my infusions. I’ve learnt to be open with my managers and colleagues about my condition. At first, it was difficult explaining why the treatment is so important, but being honest has helped people understand and support me better.
Making people aware – especially in professional environments – has been one of my biggest personal challenges, but it’s been worth it.
The treatment that changed everything
I was seriously unwell before starting treatment. But thanks to weekly IG subcutaneous infusions, my health has vastly improved. These infusions are now just part of my week.
I also want to highlight the incredible care I’ve received from the experts and hospital staff in Newcastle.
My advice to others
If you’re newly diagnosed, my biggest piece of advice is simple: listen to your doctor and take their advice seriously.
I know it can feel overwhelming at first, but these treatments allow us to lead normal, fulfilling lives. Once you find your rhythm, it just becomes part of your routine.
Looking forward
When I think about how ill I was before starting treatment, I feel incredibly grateful for the progress I’ve made. I’ve come a long way, and I believe that a positive attitude and staying informed can make all the difference.
Posted April 2025.
