• Posted by danielle-dani-liptak on February 28, 2019 at 6:56 am

    I have among one of the most common forms of muscular dystrophy, Facioscapulohumeral muscular dystrophy but am still part of the rare disease community.

    FSHD is a disorder characterized by muscle weakness and wasting (atrophy). The disorder gets its name from muscles that are affected in the face (facio), around the shoulder blades (scapulo), and in the upper arms (humeral). Hamstring and trunk muscles are affected even more but are less well recognized. Symptoms usually appear before age 20, but can begin in infancy or later in adulthood. Severity of the condition varies widely and some people remain asymptomatic. FSHD is most typically characterized by relatively slow disease progression. Specific symptoms and findings may also vary in range and severity, including among affected members of the same family. Life expectancy is not shortened. FSHD is usually inherited as an autosomal dominant genetic condition.

    I like who I am, I like that I see the world from a perspective that most never will. How about you?

    I appreciate that with hard work and a strong support system almost anything is possible! Do you believe that your rare disease is something to be celebrated? What have you learned about yourself that you can appreciate because of your disease?

    danielle-dani-liptak replied 5 years, 1 month ago 1 Member · 0 Replies
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