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Living life with Muscular Dystrophy (MD) and ME

Muscular Dystrophy Limb Girdle Diagnosis

My name is Maria and I was diagnosed with Muscular Dystrophy at the age of nineteen whilst studying at university. This is a muscle-wasting disease in which science has yet to find a cure. My type is Limb-Girdle and it affects the pelvic area, legs arms, and the heart muscle.

Movement difficulties with Muscular Dystrophy

As Limb-Girdle is a deteriorating disease over the past ten years I have noticed my body rapidly slowing down. If I fall I am unable to rise from the floor, I am no longer able to raise my arms due to the muscles wasting away around my Scapular bones, and I can only walk very short distance as my leg muscles are unable to sustain long distances and I get out of breath. Recently I have started to use a wheelchair if I am traveling long distances. To maintain my strength for as long as I can I go swimming and go to regular physio in which I enjoy.

My Career

With having this muscle wasting disease I did not and will not stop it from me having my career I always dreamed about. I finished out University and I work for a construction business for the past ten years and I love it. People have it in their heads that people with disabilities are incapable of working this is far from the truth with reasonable adjustments we are more than ABLE.

Social life and fashion

I have a great social life and have the best people around to support me I believe that having good people around you when battling illness is really half the battle, it's good to get out and talk and never be ashamed of who you are. This is your journey and only you can live it how you want it, so make it a good one. I also love fashion. I constantly shop around for ideas. I am restricted to certain clothing and obviously shoes and I do believe that people with disabilities are overlooked in the fashion industry and there should be more clothing accessible for you. People with disabilities matter.

My Family

I am married and have two beautiful boys age two and six. I met my Husband when I was sixteen years of age and he has stood by me. He always says "we might not go fast but we go far". When I was diagnosed I was told the odds were against me to be able to have children. I beat those odds because I refused to believe it I always knew I would have my own family and no disability was getting in the way of that. I now stand proud as a mother with a disability to the most amazing little boys.

Having a Disability

When I was first diagnosed and anyone mentioned the word disability, I just shut them down. I couldn't accept it. I felt I no longer fit in with my friends as I was unable to do the same activities. Now, disability is just a word to me. It will never get in the way of what I want to do in life. If anything it has made me the person I am today, it has made me stronger and a fighter. People ask me how I do it, how I keep positive knowing that things don't get better. My response is I absolutely love life. I want my journey in life to be fun and live the way I want to. I don't want to waste time dwelling on the negatives instead I search for the positive. I want to be able to say I never give up fighting for life, I lived it the best way I knew how.

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