Join us via Facebook Live on Wednesday, April 24, at 9:00 pm Central / 10:00 pm Eastern time (note change of time) for our conversation with Drs. Ora and Isaac Prilleltensky about sustaining healthy, honest relationships with family and friends while living with a chronic condition. Ora Prilleltensky, PhD, obtained her doctorate in counseling psychology from… Read More »
FSH Society Radio on Living, Loving, Caring, Sharing
For newly (and not so newly) diagnosed people
We have published a new e-brochure, “Not Alone,” by Kelly Mahon Hessler. Based on interviews with a wide range of FSH muscular dystrophy patients, parents, and partners, this e-brochure assures those who have received a diagnosis that whatever they are feeling, others have had the same experience. We also provide resources for people to get… Read More »
Don’t let this diagnosis limit you
When one path ended, a new one opened up by Nelson Dronet, Sulphur, Louisiana I would like to take a moment to share my story in the hope that it reaches at least one person and helps him or her understand that a diagnosis of FSHD or any other neuromuscular disease can be transcended. Growing up,… Read More »
My journey from powerless to powerful
by Dave Lukas, Lake In the Hills, Illinois Three years ago, my life was changed forever. Three years ago, I walked out of a doctor’s office, got in my car and sobbed. Three years ago, my image of what my future looked like was shattered. Today, my life is still changed forever. Today, I leave… Read More »
Moving toward well-being
Muscular dystrophy is a part of me, but it does not have me by DAVID YOUNGER, PhD Austin, Texas I was diagnosed with FSHD when I was about four, at the same time my mother and grandmother were diagnosed. The only symptoms I had at that point were that I slept with my eyes partially closed and a… Read More »