Living with FSHD by Claire Anderson - Sydney Chocolate Ball 2014

[@bibber123]

Claire, you are a true inspiration. I have FSH md also. I know what you are going through. I admire your strength and courage.

[@natasiadasilva9141]

My grandpa went through the pain of being diagnosed very young as well. he was told he was going to die at 30. but he lived to be 85 years old and could walk although with canes and such into old age. of course he was disabled and did struggle but he did live a worthwhile life for sure and had children, was a pianist, etc. the doctors painted this horrific future that thank god didnt come to fruition.

[@yanetcortes4127]

Hi i also have fsh and i cant believe how similar are story and experiences are,,i would love to attend meetings and meet people like you who can understand me,thank you for sharing your story..u really are an insperation.god bless you and your daughter,i also have a 13 yr old who is so living and helpful.

[@isaacmilne8866]

Thank you for your story! X my son is 12 and is in the process of being diognosed

[@HalFonts]

Thank you so much. I was in a bit of a funk lately. Right now after your sharing I feel invigorated, able to stumble on into next week. And as you say, fortunately we can predict the future and it is a bit scary. I know I have changes ahead because I've stretched this phase years longer than I expected to; but the time is coming for (yes, a little grieving, thank you and) getting on with my next inevitable adaptation. I've just got to focus on shifting my limited energy from denial (even though that has worked well) onto executing what I already know must be done. Thanks.

[@normaebennettrn9055]

DON'T BURY THE TALENT THATS YOU!

[@youmoanmars4823]

you sound just like me 😢

[@Inge68]

You sound juste like me... Ïm crying. .