Living with mitochondrial myopathy

 

55-year-old Val Wintle, from Poole, Dorset, has mitochondrial myopathy. She was diagnosed in 1996, at the age of 36. Val has a severe form of the condition, affecting muscles all over her body, as well as her eyesight.

I first noticed something was wrong when I was I was struggling in fitness classes – I couldn’t stand on one leg to do stretches, and my balance was off. I started finding it difficult to walk in a straight line, and found myself weaving about in the road.

I went to the doctors, and after several referrals to different specialists, I was diagnosed with mitochondrial myopathy.

I was really worried, more for my daughter, than myself. I didn’t know anything about the condition, and was told it went through the female line of the family, so I thought I had passed it on to her. Ten years after my diagnosis, I found out both parents have to be carriers for the defective gene to be passed on. As her dad is not a carrier, my daughter will not have to struggle in the ways that I do. It was a huge relief.

My condition has steadily declined over the years, and now I am housebound. I have lost all my independence. I can’t travel, and have to rely on my husband for almost everything. My condition has affected my husband just as much as me – it has turned both our lives upside down.

I used to enjoy gardening and was very house-proud, but I’ve had to let go of doing a lot of the things I once loved. I have very little energy, and due to neuropathy I am not able to grip things with my hands, which means I am always dropping stuff. I’m unable to do simple everyday tasks, such as doing up buttons on my clothes. I’ve had to completely adapt everything to make life easier. My condition has affected my eyes, paralysing them. I now have droopy eyelids, double-vision, and my sight is blurry. This makes reading and watching TV very difficult.

Living with mitochondrial myopathy is really frustrating – it’s not something you can prepare for. This isn’t how I saw life in my 50s, all my plans for how I would enjoy later life have gone out of the window.

I’m quite a spiritual person, and believe in holistic therapies which help me to relieve stress and anxiety. This really keeps me going when I am finding things particularly tough.

Muscular Dystrophy UK has always been there for me, and I attend the local support groups. It is really important to me to know that the charity is looking at potential treatments, to help people that are affected by this condition in the future.

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