A day with Pierre, who suffers from FSH Muscular Dystrophy (FSHD) [English Subtitles]

[@stenioalencar]

My name is Stenio Alencar. I live in Brasil. I'm 49 years old, diagnosed with FSHD when I was 18. It was hard, back than (actually, still is, of course). Took me a while to realize that, since I only have one life, and since I want to be a happy and productive person, it will have to be in the only life I have. I got married when I was 26 (23 years married, so far). Have 2 awsome kids: Gabriel, 20; and Aisha, 13. When we got married, me and my wife discussed about taking or not the 50/50 chances to have kids with FSH. The decision came with the answer to one simple question: if I had a chance, would I choose to be borned again, in the same life, exactly the way I am? My answer was YES, and, about my wife, she chose me the way I am, so... Anyway, so far, no signs of FSH in any of our kids (we decided not to test them for FSH, since it would make no practical difference, other then stressing them and us, unnecessarily). If they happen to came out with FSH, that's something we (tham and us) will deal with in the right moment. Professionally, I used to be a musician (bass player and producer), but 5 years ago it got pretty hard for me to play the bass and, mostly, to be on the road, so I decided to go after another old dream: get into law school. So I did it. I graduated from law school last year and passed the tests to be a lawyer. Today I work for the brasilian government, in the Labor Justice (I still play the bass, and produce music, but just for fun, with my friends). Fact is: FHS doesn't define me, for it's olny one of the many chalenges life imposes me (and every one) every day, but it isn't definetely the biggest one. I live my life one day at the time, enjoying each good moment I have, celebrating every victory; focusing my energy to accomplish my goals, to reach my dreams , and they are many.

[@_J.L_]

hi stenio thank you for sharing.

[@prabuark9467]

Hi bro I am also affected by this. Now I am 31. With usual life style. How worse will it be for me in future. As of from your point of view

[@VonHanshaw]

I live in the USA. I was diagnosed with FSH MD in 1984. Thanks for the video.

[@Muscleowl]

Good video, guys. Thanks for sharing!

[@JAYOBII]

Wear boots (8 inch if possible) and or ankle support (with 6 inch boot). This will help with foot drop. It makes walking much better.

[@NorthernMan932]

I've was diagnosed with FSHD after contracting guillain barre syndrome, I received no treatment for either sickness and I sometimes wish I we're dead.

[@abirmir6395]

Incredible

[@nahidkhan2700]

I am also suferring FSHD my name is nahid