This story about “coming out” with an FSHD diagnosis was first published in the 2014 summer issue of the FSH Watch newsletter. Its message is timeless. The #FSHDselfies campaign by… Read More »
“Coming out” with my FSHD diagnosis
Telemedicine for FSHD
Telemedicine for FSHD is an idea whose time has come! If people with FSHD are rare, doctors who understand FSHD are rarer still. Patients who don’t have the time or… Read More »
Travel report: Boston Abilities Expo
by Danielle Liptak, Leland, North Carolina Last fall, I traveled with my parents to Boston for the Abilities Expo. It was a great trip and I’d like to share my… Read More »
Genetic testing for FSHD—a new frontier
Several genetic diagnostics labs now offer a test called whole-genome optical mapping for FSHD Type 1. Some also offer a neuromuscular panel that includes FSHD Type 2. These are major… Read More »
FSHD and COVID-19
As communities everywhere take steps to reduce transmission of COVID-19, we would like to share some information provided by our panel of medical advisors. For most individuals with FSHD, the… Read More »