Blog: Me and my Disability, FHS Muscular Dystrophy


Posted in Branch news, Disabled members

My name is Dor Ford and I am the Disabled Members Officer for North Tyneside Local Government Branch.

Around 1 in 5 working age adults in the UK have a disability. I have worked for North Tyneside Council for 26 years and I have FHS Muscular Dystrophy.

FSH is an inherited condition characterised by weakness and wasting of muscle tissue. My dad was diagnosed with the condition when he was 15 and told there was no cure, little research, and no medication other than painkillers before being sent home. But his diagnosis didn’t stop him from doing what he wanted to do. As my Dad got older and struggled to walk, he used a wheelchair and could still drive. His wheelchair and car became his legs and he still got out and about.

I wasn’t diagnosed with FSH until I was in my 30’s and it was a shock at the time. A genetic nurse came to my home and explained the diagnosis. Appointments were made for my children and myself to go the Institute of Human Genetics in Newcastle to be tested. The team at the centre are amazing, caring, helpful and are always available.

Looking back, I had noticed weakness in my arms and legs and put it down to the age thing, as you do. Growing up, I had noticed a difference in the sides of my face and just thought, no one’s perfect.

FHS refers to Face, Scapula and Humeral muscles but muscle wasting has affected my arms, hips, lower back and face. I have drop foot in my left foot and wear a splint to stop me from tripping up which still happens. I have mastered the art of bouncing back up, though.

I also have an autoimmune disease that has caused my immune system to attack my internal organs. So far it has attacked my spleen and thyroid and I have had both organs removed which has left me with other issues. Autoimmune also causes fatigue so some days it feels like a chore to get out of bed to go to work. I’m tired before I start.

Through my working life I have been blessed to know many supportive colleagues, but I have known colleagues to make insensitive remarks. These comments usually come from a lack of understanding which is why we boost education and support around disability in the workplace.

If there’s a will there’s a way and I’ll always give things a go. Living with a disability makes me more determined to succeed in things I do. Everyone faces challenges in their lives, but these challenges can often be overcome with a little help and reasonable adjustments.

At first my disability was hard to talk about. When I’m open about my disability, I’ve found some people’s focus moves towards what I can’t do. I prefer to focus on all of the things I can succeed in when given the proper support and adjustments. The most important thing to understand about people living with disabilities is that only they can make a judgement about their own capabilities.

I’ve been supported no end and many adjustments have been made. What’s important is that I’m the only one who can say what I’m capable of at any given time.

My disability is a hidden disability. I understand how people with hidden disabilities don’t want to shout out about it as prejudices attitudes remain a reality.

I don’t hide my disability. It’s a part of who I am and has helped me to become the brave and compassionate person I am today.

Dor Ford

Disabled Members Officer