5 Questions About FSHD with TeamUP’s Rod Fulmer

Rod (center, orange jacket) poses with members of his extended family at the top of Stone Mountain in Georgia.

TeamUP co-captain Rod Fulmer has been living with FSHD (Facioscapulohumeral Muscular Dystrophy) for many years, a genetic condition that many members of his immediate family also lived with. FSHD currently affects more than 800,000 people worldwide, but that number could be higher, as the disease often goes under- or mis-diagnosed. We checked in with Rod to hear first-hand what his experiences with FSHD have been like, how it affects his life and how others living with FSHD or mobility challenges can find the strength to live their best life on their own terms.

1. Can you explain what FSHD is and how it affects your life?

FSHD is a rare condition, but it is the most common form of MD. FSHD affects people in varying degrees. FSHD affects both men and women and most start out in life with a normal childhood with very little limitations. In early teenage years, the weakening of the arms, legs, torso and facial muscles begin. FSHD can progress very slowly and then at times you may have a rapid decline of strength. Some people living with FSHD are in wheelchairs before adulthood. 

2. What is the one thing you’d like the general public to know or understand about FSHD?

Although we don’t walk or move exactly normal most people don’t realize the weaknesses we have (not even family). It’s hard picking up a large drink much less a gallon of milk. Stairs and curbs are hard to maneuver. FSHD also affects the muscles in my face, which can make it harder to smile. That means sometimes people might think I’m annoyed or unhappy—but really I’m smiling on the inside! This makes having FHSD a true lesson in patience.

3. Are you involved with any FSHD-related groups or organizations? How so?

I am involved with the FSH Society and was instrumental in getting a chapter started here in Atlanta. For many years I was active with the MDA but later realized the FSH Society is a grassroots organization of FSHD patients heavily involved with research.

4. How have your Allard AFOs helped with FSHD? What kinds of activities have they allowed you to do?

My Allard BlueROCKER® 2.0 braces have allowed me to walk much longer than I probably would have. And walk more normally without falling.

5. What would you say to other people living with FSHD or other mobility challenges?

Keep moving as long as you can, because there are things out there like AFO’s that help. Get in the water if you can: water allows me a full cardio workout. There is so much research going on that there may be a cure for what ails you, so you need to be ready and always on the lookout!

Learn more about Rod and his personal journey to Get Back UP here.