No treatments or therapies are available for those with FSH Muscular Dystrophy. To learn your child has a progressive degenerative condition, and have nothing to offer which may alter that course is heartbreaking, you feel powerless.
So the next question was "How close are we to developing a treatment?" "What are researchers doing for those with FSHD?" The answers to those questions were "not close" and "not much."
It was only in 2004 that a bill was passed mandating the funding of Muscular Dystrophy research by the National Institute of Health (NIH). Up until that time there was no Muscular Dystrophy research being supported by the NIH. The National Institute of Health provides research grants to scientists for all types of research. There are grants to study conditions such as aging, asthma, AIDS, acne, Chronic Fatigue Syndrome, Depression, Infertility, Mental Health, Obesity, Psoriasis, Smoking, etc. But prior to the legislation passed in 2004 there were no grants to study the life altering, dream ending disability collectively known as Muscular Dystrophy.
Muscular Dystrophy was a condition I had learned about in Nursing school. I never knew much about it as I focused on maternity nursing, childbirth and a variety of perinatal issues. In fact, I always got Muscular Dystrophy confused with Multiple Sclerosis. I don't know why I confused the two conditions other than they both start with the letter "M." It was not until my son was diagnosed with Facioscapulohumeral Muscular Dystrophy that I learned what Muscular Dystrophy was and what it would mean for his life.
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