The FSHD Society is launching a new chapter for families with early-onset FSHD (also called infantile FSHD). Led by Ally Roets, the chapter will meet virtually to serve people everywhere who have affected family members. Early-onset FSHD is defined by facial muscle weakness before the age of 5 and shoulder/arm weakness by age 10. Children with this diagnosis may experience faster-progressing symptoms. They also have a higher risk of retinal abnormalities (Coat’s disease), hearing loss, and other complications. Their challenges are different from those of “classical” FSHD, and so it’s important for families to have their own community for education and support. If you are living with early-onset FSHD, please join! The first meeting of the chapter is on May 19, 2021, at 2:30 p.m. US Pacific Time.
You can learn more about early-onset FSHD by visiting our newly revamped page, where you can learn basic facts and watch Dr. Tina Duong’s video about research on this form of FSHD.