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Personal Stories

Hi, my name is Tony Mitchell. I have probably had Pompe disease for much longer than I initially realised. I consider myself a lucky person; I led a full and active life until my mid 40’s when this genetic disorder began to affect my physical capabilities. I have had several careers including catering, the Merchant Navy, car sales, shop management and supplies. I left London in the 1987 and I bought a shop in West Wales and ran it for 18 years. However, I had to take early retirement aged 58 years because of my muscle weakness.

Finally diagnosed 2007

I began to notice in my late 30’s that I found certain things like riding a bike and walking upstairs increasingly difficult. Seventeen years ago, my GP, after much deliberation, referred me to the University Hospital of Wales. I was diagnosed with a muscular dystrophy and that simply meant checkups each year.

My sister in the meantime had a blood test at University Hospital London and it was found that she had Pompe disease. Naturally, I became curious and asked for the same test. Pompe was confirmed in 2007, and I started my treatment in London. Eventually infusions for adults came to Wales and I began home treatment in 2009.

Tony finds his Rollator gives him more independence.

Pacing and exercise have helped

Over the years I have learnt to pace myself as I have limited strength and lack energy but I am determined to keep as much muscle power as I possibly can by having a strict regime of exercises. I take part in as many social activities as possible, my hobbies include playing bridge, photography and listening to music.

Independent with my Rollator

My greatest asset was the purchase of a Rollator, a push along trolley with a seat and, most importantly, brakes! I found this one a “Nitro” on the internet. It also folds up for easy storage. Anyone looking to buy one should ensure the height and seat size are suitable for their needs. Most importantly it gives me more independence when out and about.

I really enjoy our South Wales Pompe patient “get togethers”, a chance to have a chat, exchange information and meet the professionals.

I would like to take this opportunity to send my best wishes to all fellow AGSD-UK members.