My name is Vicky Hunter-Joyce and I was diagnosed with FSHD when I was 18 months old. It runs in my family on my mother's side. My mother has it, as do both my brother's. I had an aunt that was in a wheel chair, and I also have a cousin Mike, age 55, who is in a wheel chair. I do believe a lot of other family members have it too but have never been tested.

I never had children of my own. My doctor said I could, but it would be hard on me. Luckily I married a man that had 2 children, and they became my family. Although I later divorced their father, I am still very close to the kids. They are in their 30's now, and I have 6 grandchildren.

I am 48 years old, and just in the last year or so have really noticed a difference in how severely it is affecting me. I find myself getting tired and fatigued a lot quicker than I used to. For quite a while I haven't been able to lift my arms above my head. I have never been able to whistle or blow up a balloon, and I can't drink through a straw like a normal person. I always look like I am upset about something do to not being able to smile. I hear all the time "SMILE," and I try to do the best I can. I get frustrated because people can't read my lips when I talk at a whisper. I just hate that I can't do everyday normal things that a healthy person takes for granted. Like change a light bulb or hang a curtain rod. Or even reach something from an upper cabinet.

I currently work as a server, and it is starting to take its toll on me. I used to sell cars with Saturn before the company went out of business, but now I know I couldn't do the long hours that a sales person works. I had to take what ever job I could get in this economy, which is how I ended up as a server again after 25 years.

I trip and fall quite often do to what is called drop foot. It is getting harder to pick up dishes and carry them, and I was let go from one job because I couldn't carry a tray. I find myself being worn out by the end of my shift... tired and grumpy!! When I get home I am too tired to do the regular things that need to be done in my house. I sit down and don't want to get up. The muscles that I do have are sore from doing all the work.

I think about how worse off I could be. I could be like my aunt who was in a chair or my cousin who is in a chair and can't hardly feed himself anymore, because he can't lift his hand up to his mouth. And I push myself to move on.

I live alone which makes it hard sometimes. I choke very easily when I am eating or even on my own saliva, and it is a very scary feeling. My dog Buster, a 12 yr old Golden, is always there by my side nudging me and barking when I choke. It scares him too, and I think he is trying to help me. My Best Bud!!

I hope they find a cure soon. It is hard to see family members go through this debilitating disease. It is heart breaking!

I recently filed for disability but was denied, so I have hired a lawyer, and he seems to think I have a good case. I would like to continue to work a couple of days a week if I can. I enjoy being around people, and I do like my job. I am just finding it hard to do anymore.

Best wishes to all the other FSH patients out there. God Bless you all.

— Vicky Hunter-Joyce