The story of Eva
I am a 32 year old female. I was diagnosed with Limb girdle muscular dystrophy in 1996. Limb-girdle muscular dystrophy encompasses a large number of rare disorders. Currently, there is no cure and the disease inevitably worsens over time. The term “limb-girdle” is used to describe these disorders because the muscles most severely affected are generally those of the hips and shoulders—the limb girdle muscles. At the time of diagnosis I was only 14yo and didn’t understand much what the doctor was saying. The only part that stuck on my mind was the “no cure”. For me the journey with MD was very lonely, though I thank God for the support I got from family, friends and teachers, I still felt I did not belong. After High School I started searching on the internet to see if there were people with the same condition and I was surprised to know so many people were suffering from MD. In Kenya I have met a few with MD. LGMD has robbed me my mobility, I use a wheelchair nowadays, my muscles are getting weaker by the day but am not complaining because I have no pain.
I hope a cure for MD and all the rare diseases is found soon in our lifetime so that all suffering with rare diseases can have a new lease of life.
My blogspot is www.aboutmusculardystrophy.blogspot.com