FSH Society


Facioscapulohumeral muscular dystrophy is generally categorized as a neuromuscular disease, like all muscular dystrophy types. Muscular dystrophies are denoted by defects in the physical, structural, and biochemical components of muscle, the death of muscle cells and tissue, as well as progressive skeletal muscle weakness.

FSHD gets its name because the advance loss of skeletal muscle is typically across the muscles in the upper arm, back, and face. Also, the legs, hips, and abdominal are affected in numerous patients.

Muscle weakness frequently sets in asymmetrically, disturbing only one leg or arm. Because of this, the symptoms are incorrectly attributed to a sports injury or strain. Symptoms may come early, years before a formal diagnosis. These could be:

  • Failure to whistle
  • Failure to use a straw
  • Eyes that don’t completely shut while sleeping
  • Trouble with such exercises as pull-ups and sit-ups
  • Shoulder blades that look like wings
  • Trouble raising arm over shoulder
  • Dropping feet
  • Feeble lower abdominal muscles
  • Weakening of chest muscles
  • Curved spine (lordosis)

An approximated over 860,000 people in the world suffer from a curved spine. FSHD strikes people of every ethnicities and races. About 10% of these individuals have symptoms before the age 10. The illness is inherited and can affect several family members across several generations. Around 30% of cases are in families with no prior history. The bottom line is no family or individual is immune.

As long as the FSH Society is around, no patient will have to deal with this illness alone. And with substantial donations from families, patients, sponsors, major donors, and friends, we’ll keep working to fast-track research leading to treatments.

The globe’s biggest grassroots network of people with FSH muscular dystrophy, their families, and research activists, the FSH Society was established in 1991 by two patients, Steve Jacobsen and Daniel Perez. The FSH Society aids individuals via outreach, education, and medical research. They also advocate for raised industry and government investment in FSHD.