My name is Claire and I have common variable immune deficiency (CVID).
I had various chest infections throughout my teens
The slightest cold always resulted in a course of antibiotics. Any cuts that I had took a long time to heal and, as I got older, my infections seemed to get worse.
Eventually my GP referred me to an immunologist in Glasgow
Dr Thomas is lovely! My results came back and, to my surprise, I had CVID. At last there was an explanation as to why I always seemed to be ill. It was bittersweet and sad at the same time.
I started my childhood immunisations again to try to reboot my immune system, but to no avail
I then began taking antibiotics daily, but that treatment had no effect either. In 2018, I started immunoglobulin therapy (intravenous infusions). Since then, I’ve noticed a reduction in the number of infections I get, but not a total reduction. It is hard to tell when I’m getting an infection because I don‚t get a temperature. It takes me a lot longer to heal and many courses of antibiotics or antivirals to recover.
My veins have packed in, so I recently started HyQvia, which is a product infused subcutaneously
It is very unpleasant but apparently necessary to try to keep me well. When I was told I would have this treatment for the rest of my life, I cried, because I don’t enjoy it. It can make me feel lousy a week before and a week after, but I’m learning to deal with it!
I’m 44, a mum, a wife and I run a business
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.
For anyone starting this journey, my advice is to push, push, push, to find the right help
Try to manage your own health; learn when you’re becoming unwell and act fast. I have a lovely team of nurses at my local hospital/hospice ward who help to make my treatment more manageable and bearable. For that, I’m very grateful. We have a fantastic NHS.
Posted October 2020