Thursday 28th February is Rare Disease Day so in celebration I thought I’d tell you all about my recent diagnosis of a 3rd rare disease.
On Thursday 14th February I was diagnosed with Myelodusplasia Syndrome. A wonderful Valentine’s present.
In all honesty 2019 had been pretty rubbish up to this point with my platelets dropping horribly low and not being to fly to South Africa, being admitted to hospital and having to go for a bone marrow biopsy (not nice to have, I wouldn’t advise it)
The bright side of this diagnosis is that I’m currently low risk so will just be monitored at the moment with regular blood tests.
If you want to learn more about MDS there are two organisations that offer brilliant information; MDS Support Organisation and MDS Foundation.
Rare Disease Day is an important day day for us rare patients to bring a spotlight to rare diseases.
This year Rare Disease UK have created a campaign “illuminating rare diseases” a great chance for patients to share their stories and rare diseases.
EURODIS the voice of rare disease patients is also marking Rare Disease Day encouraging social media participation among patients.
With 3 days to go please support Rare Disease Day and the patients who cope every day with issues you can never fully understand.
How Rare? 