Growing up, I watched my mother and grandmother battle FSH muscular dystrophy. Not many people know about FSHD, but it affects more than 500,000 people around the world, and there is currently no treatment or cure. The disease attacks muscles in the face, shoulders and upper arms. It often affects people's ability to smile, lift objects and can confine one to a wheelchair as the disease progresses.
My grandmother, for example, had a motorized scooter attached to the back of her car. Every time she parked, I remember having to assist her with getting out of the driver's seat, which was no easy task, and having to help her walk ever so slowly to the back of the car to her scooter. She has to hold herself up by using the hot, hot, burning car in the Arizona sun as her safety net, as if she felt she might fall. It was agonizing to observe my Grandmother struggle like this. Once we finally made it in the house, it was difficult to see her struggle with chewing, swallowing food, or even drinking from a glass or straw. It was heartbreaking to see as a child, and it was confusing at first because I wondered why all the other Grandmothers out there weren't dealing with the same thing. Then I grew up and realized, "Oh, this is FSHD."
My mother was also diagnosed with FSHD, since the disease can be passed genetically. The most heartbreaking thing I had to witness with my Mom was her inability to live life the way she wanted to. Simple things like walking from her bedroom to the living room required a rolling stool for her to lean on and balance herself because she could no longer walk upright. Other things that usually don't require much effort or thought, such as grabbing a coffee mug from a shelf above your head, became the most arduous challenges for her. It brought tears to her eyes, which of course then brought them to mine.
Despite the fact that FSHD was such a huge part of my own life I came to realize that the disease is largely unknown, even in the medical community. Through my work with the award-winning non-profit FSH Society and the Muscular Dystrophy Association, I have met many other people with the disease at various events, fundraisers and telethons.
One of my biggest joys and delights is getting to attend FSH Society events. There is such a beautiful and strong sense of community there. People of all ages, orientations and races come from all around the nation, sometimes the world to be among individuals and families going through the same exact things as they are; the same exact thing as I did. There is a beautiful sense of camaraderie -- having never met these people before and knowing there is a good chance you may never get to run into them again -- knowing you all are going through the exact same thing, and understanding each other and the disease. Everyone in the room is there for you.
The kids with FSHD especially touch my heart. Sadly, the early-onset form of this disease affects children more severely than adults. There are many amazing children out there with some of the most winning personalities imaginable that are overlooked by their peers because they are confined to a wheelchair or leg braces. Their peers do not give them a chance, or are afraid to get to really know them, ask them to participate, or ask questions because they see them as fragile delicate eggshells... "not normal" and "different." That is heartbreaking because these kids are our future and our hope, and some of the most interesting, fascinating human beings you will ever find yourself in a conversation with.
FSHD needs to be much more widely known. Not only because it's a devastating disease, but also because there has been really exciting progress and hope for treatments soon. If more people join in to help, then we could see the first effective treatments in the next few years. So I've set out to raise both awareness and funds, and hopefully others won't have to experience what my family endured.
Starting on July 7, I'm taking part in a national social media campaign to raise awareness for FSHD called #FSHDselfies. Many with FSHD are unable to smile due to the deterioration of the muscles in the face. The concept of this campaign is to show your support for people with FSHD by smiling wide on behalf of those who cannot. Please take a smiling selfie and help us raise awareness for the disease by following @FSHsociety and tagging your tweet or post with #FSHDselfies. You can also use the #FSHDselfie logo as your Facebook or Twitter avatar to make others aware of this campaign.
I know everyone can't dedicate time to be a part of the community, but taking a selfie is a quick and easy to show your support -- and believe me -- it will help us get the word out about FSHD, so that others will not have to have suffer in the future.
Max Adler starred in the hit TV show "Glee" and is currently on the ABC Family series Switched at Birth, which airs every Monday night on ABC Family at 8pm. He is a spokesperson for the award winning non-profit The FSH Society. Learn more about FSHD at fshsociety.org