#strongerforlonger - Muscular Dystrophy therapies

Its what you CAN do that really counts.

“My name is Sanah and I’m 21 years old. I’m at university studying for a degree in Film and TV Production.

I have Spinal Muscular Atrophy (SMA) Type 3, which causes progressive muscle weakness and loss of movement – it makes it hard to carry out everyday tasks. Sometimes, it makes me feel sad, but I tell myself I’ve just got to get on and do it!

Before I started coming here, I wasn’t having consistent physiotherapy. It’s so hard once you turn 18 – I felt like nobody wanted to help me. I managed to get a couple of sessions at hospital but was just shown stretches to do at home.

I first found out about the MD Support Centre when I met Ruth (Hereford, Chair of Trustees) at an event. Then when I came for my initial assessment, I met Ulrike (lead physio) who is awesome! She’s very professional yet she genuinely cares, and that’s really important to me - it makes me feel so much better.

Having regular treatment helps my body stay in alignment better, and keeps me mobile. When I go on the exercise bike, in order to stay balanced you have to keep moving, and I find this movement really empowering. I also feel more motivated to keep up my exercises at home, because the physios help me see the difference it makes to my condition.

Now, the Centre is like my second home. It has such a nice atmosphere, and I like coming to see everyone. My mum says it improves my mood and I’m much happier now. I just love it.

I live quite far away, it takes two hours by public transport. Because of this, I come once or twice monthly, but I’d love to come more often. I have a combination of physiotherapy, osteopathy and complementary therapies. My mum or my carer used to always come with me, but earlier this year I took the plunge and sometimes I now come alone. I have to take two trains, arrange my assistance at three separate stations, and take a taxi once I reach Coventry. Its tiring, but I wanted to prove that I could be independent and do it my myself.

My advice to anyone with a muscle condition would be to make the effort and come to the Centre. If you put in the work, you can make a difference to your condition. You can take control and that’s really empowering. Its what you can do that really counts.”

Sanah’s story is an inspiring example for many young people with muscular dystrophy – she won’t let anything stop her!

We want to transform access to therapies so that all young people in Sanah’s position can get the treatment they need to pursue their dreams. This is why we’d like to take the opportunity to say THANK YOU once again, to you, as one of our donors, for helping us take our first step towards a toolkit that can change the therapies landscape for good.

As you know, the first tool in our toolkit will be a short film demonstrating our therapy model. We are actively raising funds to fill the shortfall at the moment, as we need to reach our goal of £3,750 ($5,000) to fund filming and production costs. Once we are successful in this, we will begin work on our film. 

Thank you for being a part of this and helping us to make it happen!

#strongerforlonger