Hi! I’m 28 and from Newcastle upon Tyne. I was diagnosed with CVID when I was 13 (just before my GCSEs).
“I never thought I’d run the Great North Run but this year I’ve decided I’m not going to let my CVID hold me back from doing the event. I want to raise as much money and awareness for PIDUK.”
A fortunate accident
My diagnosis started off when I split my head open on holiday in Turkey and the resulting CT scan showed that there were problems with my sinuses, so after the holiday my parents told my family doctor and they referred me to the Freeman Hospital to a specialist and I had a blood test.
A diagnosis of CVID
The blood test showed that my white cell was low and I was referred to Newcastle General Hospital to see the immunologist and they did more bloods and the results showed I had CVID. It was a good job I had an accident in Turkey otherwise it might have been ages before it was picked up!
Growing up with CVID
Growing up and having to deal with all the hospital appointments and coming to terms with CVID in my teen years and missing school etc. was very tough. Along with having CVID I have other related medical issues for which I am treated by specialists at the Royal Victoria Infirmary in Newcastle.
Moving to home therapy
When I was 21 I asked to be trained up to do my IVIG myself as home therapy under the support of my mum Gail. I now receive 40 mg of Immunoglobulin once every two weeks which takes 3 to 4 hours but I can relax in the comfort of my own home whilst I do it. The only problem is when I miss my vein with the needle and get anxious but that rarely happens, just once every couple of years.
Maintaining normality
I am a normal 28 year-old with a great group of friends I’ve had since high school. I enjoy my music, DJing, football (Newcastle United Football Club – of –course!) and going out with friends and having a laugh.
Retirement from ill health
I was a postman for 7 years but last year I decided to retire from Royal Mail due to ill health.
Being positive and supporting those with PIDs
I never thought I’d run the Great North Run but this year I’ve decided I’m not going to let my CVID hold me back from doing the event. I want to raise as much money and awareness for PIDUK. You can read why I am doing this here.
My top tips
- Stay positive whatever the outcome is.
- Don’t let having a PID control your life but accept that it is a serious condition. You need to make it a part of your life and not dwell about it. Over the years I’ve seen the treatment getting better and better.
Posted September 2015