Rare Disease Day 2018 with The FSH Society

Today is Rare Disease Day.

A day to raise more awareness and hopefully more money to fund research into finding cures for all those who are affected by rare diseases. The European union has so far recorded that there are approximately 7,000 rare diseases.

My partner Martyn (who blogs at Inside Martyns Thoughts) suffers from Facioscapluohumeral Muscular Dystrophy (FSHD for short) This is a rare disease which affects between 2,000-2,500 people in the UK. 
Several generations of a family are often affected by the condition. It can be diagnosed at any age and can vary widely between individuals, even within the same family. One-third of those with the condition are unaware of the symptoms right into old age.

FSHD is caused by a genetic mutation which causes a toxic protein to be produced in the muscle, killing the muscle cells. There is currently no treatment available targeting the underlying genetic causes of FSHD.  The FSH Society is constantly researching and raising funds for a cure to this progressive illness. 

This year for rare disease day The FSH Society wants everyone to share their rare talent. So first, I will share the best unique talent I have! Share yours online and use #fshraretalent so everyone can see yours!


Now I know not everyone can touch their nose with their tongue so I'm going to be proud of this talent!! I'm also donating to The FSH Society which you can do too whether you choose to share your talent or not. You can sponsor them by clicking this link.

5 comments:

  1. hehehe! I can do this too. The rest of my family can't so I class it as a talent too.
    This is a fab way to raise awareness. x

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    1. It is fun isn't It!
      I'm glad I'm not the only one who sees this as a talent!x

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  2. Umm.. Damn.. I thought Martyns talent was impressive but that seriously tops it! How!?

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    1. I know!This is seriously and by far the better talent haha

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  3. Haha! I can touch my nose with my tongue, which is about the only thing I can do with it! I can't roll my tongue or anything.
    Well done on raising awareness for a fab cause lovely! xxx

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