Tuesday, September 29, 2009

Lucy's Blog - What is FSHD (or FSH)

Here is a recent posting from Australia - Lucy gives a great, easy to understand description of what Facioscapulohumeral Muscular Dystrophy is and how it affects those that live with it daily.
To follow Lucy's blog go to http://betterthanflowers.com.au/blog/

Ok I realise I have been blabbing on about FSHD bit not really giving and details so here goes

So What is FSHD?

  • Full Steam aHeaD?
  • FreSH iDeas?
  • Fully Secured Holiday Destinations? (That would be nice!)

However it’s none of the above FSHD is a form of muscular dystrophy that apart from having a long name probably has the wrong name. FSHD is an acronym for Facio-Scapulo-Humeral dystrophy. Bizarre-I know! Facio means face, scapulo means shoulder blades and humeral means arms (not humorous, which would have been much better- having a disease that makes you laugh). Unfortunately for many of us the condition is not limited to the face, shoulder and arms, it includes legs, abdominal muscles and neck. I guess those that named the condition ran out of steam.

So what actually is FSHD???

Well, it is a muscular dystrophy that usually commences in adolescence. Over time it causes weakness and wasting of the muscles. There is currently no treatment or cure. Weakness of the face muscles means that gradually a person with FSHD can loose their ability to smile properly- they can often look sad or cross without meaning too. This can of course have big psychological effects. They can’t raise their arms above their head which makes simple things like washing their hair, reaching for the top shelf difficult, As I mentioned it can affect the neck muscles, making it difficult to hold up their head. It affects tummy muscles giving them a pot belly (terrible to look pregnant when you’re not!) Perhaps most devastatingly, it can affect the legs. This gives a foot drop which means they often need to wear a leg brace (no Jimmy Choo shoes for us!) and may ultimately end up in a wheelchair.

FSHD is complicated disease that presents differently in every person. This is however intriguing to researchers and there is currently much excitement, in the scientific community. The FSHD-Global Research foundation is funding an unprecedented amount of research into FSHD, which is very exciting for those of us with the disease. Research is expensive though and requires a lot of money. You can support FSHD research by donating at the website at FSHD, or sending someone a gorgeous chocolate bouquet from Better Than Flowers. Watch out for new fundraising ventures with Australias Biggest Book Group relaunching in November, Champagne on Thursdays and a chocolate ball next year.

That’s all for now

Keep happy, well and if you must, scoff some chocolate


Thanks Lucy for the easy to read explanation - good luck to the Global Research Foundation & your "Better Than Flowers" venture! Wish you were here in the Northwest!



Anonymous said...

HI Terry
Thank you so much for your lovely words. I am really excited that things are moving along for FSD and that people across the world are working together. i will have a think about your auction-I'm sure I will come u with something! Cheers Lucy

www.teller2teller.com said...

We have done a story about a wonderful lady with FSHD and the remarkable live she has lived – “Judith Knowles-Locke – A Remarkable Life”. I hope you have a look at it.


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