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Living With SMA as a Mom

Donna87m's avatar image

By Donna87m

1 min read

I am 35 years old. I'm a mum of 3, all by C sections. I have had SMA since I was born. I don't have a specific type it's just a mixture so I've been told.

I was born with a dislocated hip and club foot. I also have Indian horn cell disease and arthrogryposis.

My SMA is progressing

My condition is progressing, and the last couple of years it has definitely gotten worse. Along with the normal problems with my hips, legs and ankles. My arms are now becoming very weak.

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I used to be able to walk a lot more, but these days I cannot go into a shop without having to use a mobility scooter. I bought the scooter myself (still paying on it). I also suffer with anxiety and I struggle going into local public places or my local town on my scooter. Which means I stay in a lot. I currently take pregabalin for pain but it doesn't seem to do anything. I was previously on gabapentin which also didn't work.

Mental health

I now currently struggle to get in a bath and I cannot get out at all on my own so need someone to lift me out.

I struggle a lot more now with normal daily life and small activities that its starting to affect me mentally because I get annoyed with myself and very frustrated.

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