The story of Libby
Rare Disease Day lets people from all around the globe share their story, or simply read somebody else’s. It’s an opportunity to see how much rare there is in the world. 1 in 17 people have a rare disease.
I’ve recently found out that Foetal alcohol syndrome counts as rare, both my girls have this. And that cerebral palsy counts as rare which my youngest also has.
But the last few months I’ve learnt so much about what it means to be rare. When I go to an appointment and get asked about diagnosis and the doctor/nurse has never heard of it. When you’re given a diagnosis and you go away with a fact sheet you don’t understand and then google it and discover there is no information in layman’s terms!
And then you realise that out there are a few other people with the same diagnosis and you can eventually find them on Facebook. And Léri-Weill dyschondrosteosis just because another word in your vocabulary. And that there’s so many other parents with a different diagnosis but the same battle. And that we are blessed to be in an area with an amazing NHS and a European specialist based in the city.
My girls are rare in so many ways. And today we share our rare like many other families around the world
#RareDiseaseDay #ShowYourRare #MyRare #fasd #cerebralpalsy #leriweilldyschondrosteosis