The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases, the campaign also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
As someone with a rare disease myself a rare form of Muscular dystrophy, the word “rare” is mentioned a fair bit in my life since being diagnosed with a rare disease.
Having a day that shares an awareness it shows a level of solidarity among people who suffer from a rare diseases which affect around one in every 20 people. So, yes we are rare but guess what still very much human. Although I do want to point out I do like to call myself a super hero because of the name of my rare disease! I’m no wonder women (yes totally showing my age) but I can dream.
I may stand out because of my wheelchair and rare form of muscular dystrophy where my tummy looks big and sticks out to the side, plus the lack of body movements due to weakness in my muscles but also because of my sparkling personality and the permanent smile on my face. I’m an inquisitive person which I guess is why I love writing. I have a sarcastic sense of humour which has got me into trouble before now.
I understand that having FHL1 Gene mutation (told you superhero vibes!) makes me a rare kinda lady but ignore the diagnosis and the set of wheels under my bum as much as you can, and try to see passed the rare disease; see ME the person affected by the disease. People that truly get to know me like my friends and family see me for my “rare” unique personality, not my “rare” genetic makeup or life situation.
So today on Rare Disease Day I want to encourage everyone to share their rareness let’s celebrate just how are unique we really are!
Happy rare disease Day!
I’d love to hear from you do you have a rare disease or do you know someone with a rare disease?? What’s the most important thing you want people to know about your rare disease – feel free to leave me a comment.
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