Today marks the last day of world primary immunodeficiency week an official week to raise awareness of primary immunodeficiency but in reality those of us affected should never stop raising awareness amongst family, friends, healthcare workers and the public.
I have learnt quite a lot this week in that the anger some patients feel at having this condition outweighs the fact that we can receive treatments for many of the conditions and the benefits this treatment gives us.
I will always be thankful because i know without this treatment and the NHS I would probably not be here today.
Yes to be diagnosed with a rare condition (or 3) sucks but we are so lucky to live in the UK where we receive treatment for it and have access to specialists in the condition we have. Many countries have limited if any access to treatment and do not have Immunologists patients can see and therefore have to travel abroad just for an appointment.
When it comes to treatment and receiving infusions we are lucky to have the option to infuse at home. Until I was 7 or 8 my mum and I had to travel to Oxford every 3 weeks for my infusion meaning i had to take time out of school and mum work. Now I infuse at home once a week when suits me in a time window.
So what I’m trying to say is that yes it can be s**t but we are lucky to live where we live in the time we live.
How Rare? 