Wednesday 28 February 2018

Today is Rare Disease Day!

When Nolas' seizure activity had just begun (November 2017)

Until January this year I'd not heard of  Rare Disease Day. I say I'd not heard of it but what I'm sure I mean is that it has probably cropped up on one of my social media feeds at some point but I'd not really taken much notice because it didn't affect me. As selfish as it sounds that is likely to be the honest truth.
However this year it does affect me, it affects us as a family. Nola has a rare condition, something that will be with her for life, something that we're still getting our heads round.
 At this point in time we have no idea to the extent she will be affected. She could have a poorer quality of life or she could lead a near to normal life, only time will tell with her rare condition.
What we do know is that she'll probably be on medication for life to help control seizures that are caused by multiple growths in and on her brain. These will need monitoring and possibly in the future two will need some sort of intervention. That is just one of the aspects of the rare condition, that I haven't named yet because we are still waiting for genetic blood tests to confirm it.
Rare Disease Day takes place on the last day of February every year. Did you know that 1 in 17 people in the UK have a rare disease? Not as rare as you may think but there are thousands of rare diseases, most are not curable. So the aim of the day is to raise awareness of rare diseases to make the public more aware of the challenges some people face and encourage more research.
I will always remember Rare Disease Day now. Nola is my 1 in 17.

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