STORIES OF FSHD

FSHD is a progressive muscle wasting condition. For people with this condition and their families this means constant adaptation to new challenges. FSHD affects everyone differently and there is no definitive pattern of progression. These stories below are from inspiring people who are currently living with FSHD.

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Eduardo Silveira

My name is Eduardo Silveira. I was born and raised and live in Sao Paulo, Brazil. I was diagnosed ....

2020-01-15T15:30:49+10:00

Meredith Huml

“Something’s wrong with your shoulders, your bones just poked out.” That was the first ....

2020-01-15T15:31:13+10:00

Ellen Graham

Turning my weakness into strength. I never, ever would have imagined that our family would ....

2020-01-15T15:31:29+10:00

Shaun Jones

My childhood started out as any other childhood usually would. When I started school, I ....

2020-01-15T15:31:52+10:00

Geoff M

I was born in Parramatta, August 1944. In 1945 we moved to a dairy at the north end of Lake ....

2020-01-15T15:32:20+10:00

Jodie Thorne

I was born and grew up in Bristol, South West England, with my parents and younger ....

2020-01-15T15:32:39+10:00

Suraj Acharya

I was born in Nagaland, India and I grew up in a few places such as Arunachal Pradesh, Shillong ....

2020-01-15T15:32:53+10:00

Tracey Morris

It was in 1991 when I began to notice problems with my right shoulder, the only conclusion by ....

2020-01-15T15:33:08+10:00

Helen Mcarthy

I first noticed problems getting up from the ground after yoga classes when I was in my early ....

2020-01-15T15:33:31+10:00

Emma Weatherley

I’m the first person in my family diagnosed with FSHD. Looking back, I had symptoms in my ....

2020-01-15T15:34:15+10:00

Michelle Mackay

I am fifty eight years old and was diagnosed with FSHD when I was twenty-four. I was diagnosed ....

2020-01-15T15:34:20+10:00

Mitchell Albert

FSHD has robbed Mitchells childhood much quicker than we could have ever expected. Picture ....