[…] your doctor for clinical care at least once per year. Your doctor will monitor your FSHD and your overall health and can provide any medical treatments or referrals you may […]
Clinical Trials FAQ
The Mattering Effect
[…] “Mattering” is a fundamental human need, say psychologists Ora and Isaac Prilleltensky in their recent FSHD Society webinar. They define mattering as the feeling that you are valued, and that […]
Ten things I wish someone had told me…
…when I was first diagnosed with FSHD (infantile onset) by Archer Sverdrup, St. Louis, Missouri Progression is unpredictable. Sometimes you may go a year with only minor progression. Sometimes every […]
Why put off getting hearing aids?
[…] aids. High-frequency hearing loss, often mild, may occur in more than half of people with FSHD, but estimates vary. Hearing loss can be more profound in the early-onset form. It’s […]
Changemaker: Archer Sverdrup
[…] enjoy the thrill of the game and the camaraderie it brings. Living with symptoms of FSHD since birth, Archer has navigated a long road to diagnosis and selfacceptance. Now, they’re […]