About FSHD Global

This author has not yet filled in any details.
So far FSHD Global has created 64 blog entries.


MITCHELL ALBERT FSHD has robbed Mitchells childhood much quicker than we could have ever expected. Picture looking back at photo’s of the past, and how they can bring a smile to your face. Looking back at pictures of Mitchell, my husband and I have moments of happiness [...]

MITCHELL ALBERT2019-10-02T18:12:45+10:00


EMMA WEATHERLEY Having been diagnosed with FSHD only about 3 years ago, my progression has been swift and in a lot of ways I have not been prepared, either emotionally or financially for this new life direction. About 12 months ago, I started using a wheelchair [...]

EMMA WEATHERLEY2019-10-02T18:12:45+10:00


TRACEY MORRIS It was in 1991 when I began to notice problems with my right shoulder, the only conclusion by any of the medical professionals I saw was that my symptoms were being put down to having had a virus of some sort in the muscle [...]

TRACEY MORRIS2019-10-02T18:12:45+10:00


MICHELLE MACKAY I am fifty eight years old and was diagnosed with FSHD when I was twenty-four. I was diagnosed by a professor in London who assured me that this was the “best disease” I could get and to go forward and live and enjoy my life. He [...]

MICHELLE MACKAY2019-10-02T18:12:45+10:00

Helen Mcarthy

HELEN MCCARTHY I first noticed problems getting up from the ground after yoga classes when I was in my early 40s.I did a lot of walking and found I was falling over frequently but I just got up and kept going. After a while it was becoming so difficult [...]

Helen Mcarthy2019-10-02T18:12:45+10:00


Prevalence* of FSHD estimated to be 4 per 100,000 by Orpha.net. Now estimated at 1 in 7,500



FSHD Global Research Foundation established



DUX4 is shown to be toxic to muscle cells and increased amounts of DUX4 are seen in muscle cells from people with FSHD



The link between reduced D4Z4 regions and increased amounts of protein from genes in that area is first described.