Monday, April 28, 2014

Living with FSHD: An insider's look at the teen years.

If you google fascioscapulohumeral dystrophy or FSHD, you'll find the same description a hundred times.
"Facioscapulohumeral muscular dystrophy or FSHD is the most prevalent of the nine primary types of muscular dystrophy affecting adults and children. Muscular dystrophy in general connotes a genetic, hereditary muscle disease that causes progressive muscle weakness." There is no cure, no treatment...blah, blah, blah. Let me tell you what FSHD means in my world.

I want to tell you about FSHD from an insider's perspective. I started noticing muscle weakness at a very young age. My first "symptom" was the inability to reach up above my head and weakness in my shoulders. I started noticing this when I was about 16. Through my teens I did not pay much attention to this because it didn't affect my life too much. I was as normal as any kid my age, I just had a few random limitations. I could hide these limitations because I didn't want to be "different". The concept of not wanting to be "different" psychologically can be nearly as damaging as the disease itself. Because other kids can be so brutal, I never wanted anyone to know that I had any issues. It was my secret, but my secret became harder to disguise as I got older.

In my late teens and early 20's, I got made fun of because of my beer belly. Now this was long before I ever tasted a beer. My beer belly was and is caused by the wasting of abdominal muscle. I have not been able to do a sit-up since I was 14. "Are you pregnant??" Ha Ha. That's the very last thing a self-conscious teenager wants to hear.  "You should exercise, you're a weakling!" This is not fun to hear when it is directed at you. FSHD patients may not have thick muscles, but we develop thick skin at an early age.

My heart aches for the kids with FSHD. I know what they are going through. I feel their physical and emotional pain. I was fortunate because my symptoms were mild. The thing I want you to take away from this story is, although FSHD is not fatal, it can be so emotionally damaging. I realize there are diseases that are worse than FSHD and some that are fatal. But I hurt for those young adults that want to die because of this horrible disease.

So I raise money with fundraisers like Phil's Jam for FSHD to benefit the FSH Society. My friend and I are starting a podcast soon in hopes of helping patients and their families deal with these issues. (More on that later) There are many organizations working on this disease and they all deserve a lot of credit. Researchers are coming closer and closer to finding a treatment. Find one of these organizations and send them money or volunteer.

Keep the faith! A cure is on the way.


1 comment:

Carol said...

This a wonderful post and beautifully written. It shows the power of creativity. Lets get there with our hearts and minds,, even if some of our muscles are weak.


My favorite Songwriter Joel Shewmake

Quote of the year...

“Be not the judges of men, but love your brothers and sisters, and find ways to reach out to them in common goals and aspirations. Where there is love in common, the divisions of creed will melt away and reveal the true nature of man’s eternal destiny -- one of unity in purpose, to be perfect as the Father is perfect."

Author Brilliant but Unknown

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