The science and psychology of managing chronic pain Chronic pain is one of the more difficult aspects of living with FSHD, and also one of the most challenging to… Read More »
Pain management in FSHD
Shoulder dyskinesia in FSHD
Our FSHD University webinar on January 27, 2022, was a revelation! We learned that the muscle weakness that causes scapular winging can lead to maladaptive, compensatory movements which themselves can result… Read More »
Extraordinary Measures – Updating the standard of care for FSHD
by June Kinoshita, Director of Research and Patient Engagement Making sure that every person with FSH muscular dystrophy gets the best possible medical care is a high priority for us…. Read More »
Extraordinary measures – Educating doctors
by Jamshid Arjomand, PhD, chief science officer It can take nearly a decade for the average person with FSH muscular dystrophy to get a correct diagnosis. Once they are finally… Read More »
Pregnancy and reproductive genetic counseling
One of the questions we are often asked is how will pregnancy and child-bearing affect an individual with FSHD? And because FSHD is passed on from generation to generation, what… Read More »