Muscular Dystrophy: Getting diagnosed in Pakistan

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by Zahra Wyne

Myotonic Muscular Dystrophy (MMD) has been in my family for many years. Many of my aunts had MMD as well as my mother. It is a genetic disease which means that me and my siblings had a 50% chance of having it.  I was diagnosed with MMD two years ago. My mother’s symptoms started appearing after the age of 50 while my symptoms started appearing in my late 20’s. That is why at first I thought that there was nothing wrong with me. It was just one of those things.

If I fell I’d just say it was just me being clumsy or careless . If I got tired I’d think maybe I didn’t get enough rest the day before.  Still my symptoms were just beginning, then they increased to such a degree that I decided to consult a neurologist all the while thinking that it was probably nothing or he might give me some vitamins and that would be the end of it.

That is not how it turned out. The doctor took one look at my face and said that “There is something very wrong with you and I think you have Myotonic Muscular Dystrophy” (MMD). After checking me over he was quite sure of it. Still being an optimist I said “Okay which medicines am I supposed to take for this to go away”. To that the answer was “Sorry but there is nothing I can do and there are no medicines that you can take to make this go away. There is no cure”. Those words made me realize the enormity of the situation I was in.

There are lots of different types of muscular dystrophies and all have different symptoms.  I was surprised to learn that such a wide range of symptoms — muscle weakness, involuntary clenching of hands and jaw, swallowing problems, eye problems, heart disorders, extreme fatigue and other difficulties — could be caused by a form of muscular dystrophy.