BEACONSFIELD local Gypsy Wulff was in her late twenties when she was diagnosed with facioscapulohumeral muscular dystrophy.

Her first doctor misdiagnosed the relatively unknown disease, telling her she had psychological issues around not being good at sport.

Falling over and fatigue proved a major handicap for a young teacher expected to get kids into exercise.

A second opinion a couple of years later saw her in hospital for a barrage of tests, and a diagnosis of a disease Ms Wulff had never heard of.

Vanessa Kredler, director of philanthropy at the FSHD Global Research Foundation, says few people know about the disease and “even some affected don’t know they have it.”

• Gypsy Wulff. Photo by Jenny D’Anger

The complex, progressive muscle wasting disease is commonly associated with progressive weakening of facial, shoulder and upper arm muscles, robbing people of their ability to walk, talk, smile or even eat.

Unlike duchenne muscular dystrophy, which affects boys and is diagnosed at an early age, FSHD hits men and women, and can surface in childhood or later in life.

Wulff’s father developed symptoms in his 50s and an aunt in her 60s.

Now 62, Wulff’s determined not to let it rule her life, and is a passionate animal rights activist, co-editing Turning Points in Compassion, and a piano teacher.

“I want to get the message out there of doing what you can do. You have to be careful about letting others define your future.”

Philanthropist and former Macquarie banker Bill Moss AO established the FSHD Global Research Foundation in 2007.

The organisation has funded 40 research grants in nine countries, resulting in 44 publications in international medical journals.

June 20 is World FSHD Day: “We are asking our community to join us and spread awareness of FSHD and raise funds by hosting their own fundraiser,” Ms Kredler says.

For more information go to http://www.fshdglobal.org.

by JENNY D’ANGER