FSHD Stories

  • Medicare coverage for ongoing maintenance physical therapy - Article adapted with permission from Melissa Fox, PT, DPT, University of Virginia Health System. There are times when a short course of physical therapy (PT) can meet your current needs, and you can then continue exercises on your own. Other times, however, ongoing PT may be necessary to maintain your current status (strength, flexibility, mobility, … Read more of "Medicare coverage for ongoing maintenance physical therapy" »
  • A surprise $50K gift - From a simple act of kindness When Jim Chin, chair of the FSH Society board of directors, donated funds for travel scholarships so that 20 patients could attend our 2018 FSHD Connect conference in Las Vegas, he had no inkling of the dividends his gift would yield. $50,000 to be exact. That’s the amount of … Read more of "A surprise $50K gift" »
  • Everything you ever wanted to know about FSHD - (but were afraid to ask) There’s no doubt that facioscapulohumeral muscular dystrophy is a complicated condition. The challenge of pronouncing it correctly is a piece of cake compared to the difficulty of understanding its genetics, peculiar effects on muscles, and the extreme diversity of its symptoms and severity. Our webinar on May 22 will introduce … Read more of "Everything you ever wanted to know about FSHD" »
  • Tips and tricks for getting up after a fall - Check out this video by an occupational therapist demonstrating a variety of ways to get up off the floor after a fall. These require having some strength and might not work for everyone, but knowing these tricks could come in handy.
  • Surgery fixed my eye problems - by Nikki Young, Clarksburg, Maryland Like many others with FSHD, I have suffered from dry eyes. Weakness in the muscles around my eyes prevented me from closing my eyelids fully, even in my sleep, so my eyes would become dry, itch, burn, and tear up. It got so bad at times that people would ask … Read more of "Surgery fixed my eye problems" »
  • Danny Kurtzman designs for life - The headquarters of Ezekiel Clothing is tucked in a bland office park in Irvine, California, but inside it’s anything but bland, with its too-cool-for-school interior of concrete, charred timber, and smoky steel. When I arrived there, tapping tentatively on an unmarked, tinted glass door, I wondered if I had come to the right place. Soon, … Read more of "Danny Kurtzman designs for life" »
  • Mountains to climb - by Neenah Williams, Colorado Springs, Colorado I was diagnosed with FSH muscular dystrophy at the age of 16. I am now 27 years old and have started to feel more of its effects. From an early age, I began to lose the ability to lift my arms higher than 90 degrees. That never stopped me … Read more of "Mountains to climb" »
  • My journey continues - by Ian Rys, Port St. John, Florida When I turned 50, I began to feel I was moving and walking differently. I won’t lie: That scared me.  I’ve always tried to have a positive outlook, but FSHD was starting to break me. I have great support from family and friends, but I needed something more. … Read more of "My journey continues" »
  • A slam poet’s take on living with FSHD - As with any aspect of the human condition, living with FSHD can inspire all forms of artistic expression. Cypriot Argyri Ioizou recently won his nation’s first-ever slam poetry competition. Congratulations! Here’s his story. Scroll down for the poem and video of his prize-winning performance: I was born in 1979 in Manchester in the UK then … Read more of "A slam poet’s take on living with FSHD" »
  • Tips and tricks: Nite Hood - Eye dryness during the night is a chronic complaint for those who can’t close their eyelids fully, as is often the case for people with FSH muscular dystrophy. One solution from the grocery store aisle is to use Glad Press & Seal as a self-adhesive mask that holds eye ointment and moisture in place. For … Read more of "Tips and tricks: Nite Hood" »