Sharing: My Becker's Story

In the spirit of sharing about other forms of muscular dystrophy, I would like to share this video.  It is specifically about Becker's MD, but many of the symptoms and facts conveyed are true for other muscle disorders as well.

What is Becker's MD?

You may even be inspired to click on other videos about MD on YouTube!

FSH Society

~FSH Society partners with Wellstone Muscular Dystrophy Cooperative Research Center~

"There are currently no clinical trials of novel therapeutics for FSHD ongoing in the United States because of a lack of relevant preclinical data to direct development of therapeutic targets to disease mechanisms. The Wellstone Center seeks to change that. 

'FSHD leads to severe muscle weakness and our Center's therapeutic approaches will focus on development of drugs that target disease genes, as well as drugs that improve muscle strength,' says Center Director Charles P. Emerson Jr, PhD, professor of cell & developmental biology and neurology. 'The therapeutic approaches being developed by our center will have broad application to the treatment of other muscular dystrophies and other debilitating medical conditions of muscle weakness including aging, muscle injury and confined bed rest.'"

Baby Blues

I am almost 28 ½ years old.  I do not have any children, and recently, I have realized how much I want a child.  Lately, I cry when watching TV shows with babies, and I now feel that ache in my heart.  That ache that lets me know- okay, you are now emotionally ready to take care of another human being.  Being physically able is another story.  

Several weeks ago I met with a genetic counselor.  We talked about my family history and about the options for having a baby.  I was already well-versed in the options and the risks for me having my own child.  Not knowing much about FSH MD, I sent her my gene test and she called a genetic counselor at Athena Diagnostics, where the test was performed.  She did learn some interesting things which she passed along to me in a phone conversation after our initial appointment.

One thing I had been told (or read- I can’t remember) was that if I got pregnant, they could test the fetus to see if the baby was likely to have FSH.  This is actually not the case in 2013.  Testing is currently only available from blood samples and therefore could not be done during prenatal testing.  I think I was told/read that while they could test a fetus for presence of the gene they would not be able to tell the severity… the presence could mean symptoms as hard to deal with as mine, or they could show no symptoms at all.  I assume these facts are related.

Therefore, my options would be to have a baby of my own and “chance it.”  The physical stress this would put on my body is obviously a big part of this scary decision.  I could have a surrogate carry my egg and “chance it” or carry a baby with their egg and my future partner’s sperm.  Or, I could adopt.  She was very adamant that while the technology isn’t available in 2013 to test a fetus for FSH MD, it could be in a few years.

Almost as if the Universe was feeling the pain in my heart to realize and accept that I would {probably} never carry a child of my own, the Today Show did this amazing special on adoption for a whole week.  I have always thought giving a child a home who needed one would be a great way to go.  During the special, they were talking with kids of all ages who just wanted a family to love them. 

I am now 99.9% convinced that adoption would be the best and most natural option for me to have children.  I better begin my research.

Veterans Day

Let's all take a moment to honor and pay tribute to our veterans on Monday.
 
"On the first anniversary of her election to Congress, Rep. Tammy Duckworth, an Illinois Democrat and Iraq war veteran, urged the passage of a treaty that would protect the rights of individuals with disabilities on a global scale."  Read the rest of this article here.

FSH MD

FSH MD occurs in 7 out of 100,000 people and is the most common form of muscular dystrophy.

People with FSHD comprise about 25% of all muscular dystrophy sufferers.  

There is no cure.

Friends of FSH Research is a wonderful organization dedicated to finding a cure for FSH muscular dystrophy! If you're looking for a way to support the cause, consider donating to them. 

No matter how large or small the obstacle may be- this is an important reminder that you can get through it.