For decades, Miriam Heppell lived in near-constant pain due to regular dislocated joints and arthritis. While she was always told they were isolated injuries, she knew something wasn’t right – not only was it happening more and more, but her body wouldn’t recover in the way other people’s would.
It was only a few years ago that she finally discovered she was living with a genetic condition called Ehlers-Danlos syndrome (EDS). It affects the connective tissues of her body and essentially means a lot of her joints end up with difficulties and can easily dislocate.
It’s since receiving this long-awaited diagnosis that Miriam, who now works independently with Fire and Rescue Services as a Consultant after senior roles at Humberside FRS and London Fire Brigade, has been in touch with us for support – and, thanks to donations from our supporters, she’s been able to receive “life-changing” support for both her physical and mental health.
“I’ve had problems since I was born but my mobility has significantly reduced over the last three or four years, to the extent I use a wheelchair most of the time now,” says Miriam.
“There aren’t any specialist physios for EDS on the NHS, because it’s so specific, so I’ve been paying privately for my daughters, who also both have it, to have that. I try to go every few months too but obviously it gets very expensive.
“I then suddenly thought, I’d heard so many good things about The Fire Fighters Charity and the physio you do, I thought I’d give you a call.
“I came up to Penrith to Jubilee House for the first time in 2022 and it was great.
“On that first visit I was barely able to move because I’d just had surgery on my foot and in the time it had taken for that to recover, I’d lost all my muscle strength. I use a wheelchair now anyway, but I could barely do anything.
“They started really gently bringing exercises in, with a lot of hydrotherapy, before giving me a whole load of exercises to do in the months afterwards.
“I was then invited back in the December and I was a lot stronger by then, because of that. They then gave me more exercises and I then went back a third time, in June 2023, and I was able to do more again.
“I’ve gone from being lifted into the pool in a hoist and not being able to carry my own weight, to lifting weights a year later. I still need the hoist for the pool, but I’m a lot stronger now. That’s all because of the team there. It has literally changed my life.”
Miriam adds: “The physios are just unbelievably skilled and patient-centred… when they knew I was coming, they didn’t know about EDS before and they sat with me to fully understand that condition. You don’t get that generally.
“Then the nursing care is amazing too – they’re a constant support to me the whole time I’m there, even when I’m silly and try to do too much!”
Miriam has also recently received support for her mental wellbeing from us too.
“Since my last visit I’ve had a lot of difficulties in my personal life and I was offered some online counselling,” she explains.
“I was also struggling a lot with the pain levels I’m experiencing because of my condition, plus I’ve had a few changes recently with my job in the fire service, so it was all piling up.
“The Fire Fighters Charity is the only place in my entire life where they have treated me as a whole person.”
“It was brilliant, absolutely brilliant. The support I’ve had from the Charity has literally been life-changing. Absolutely life-changing.”
Miriam has had several joint dislocations in her life which have led to extensive arthritis and subsequent replacement surgery. While she had always had each of her symptoms treated independently, she says the hybrid approach to support she’s had from us has made a huge difference.
“The Fire Fighters Charity is the only place in my entire life where they have treated me as a whole person,” she adds. “They’ve supported my ADHD, they’ve supported my physical health, my mental health, they’ve just been amazing.
“I’d encourage anyone to get in touch if they feel they’d benefit from this support.”
Miriam is now a director with Women in the Fire Service, as well as working closely with the NFCC and recently becoming a National Lead for neurodiversity in the fire service – a cause close to her heart.
She says the support she’s had has given her the confidence to not only pursue those dreams, but carve a path as a wheelchair user in the fire service – something she hopes will inspire others in the future.
If you feel you’d benefit from our health and wellbeing support, we may be able to help you. Call our Support Line on 0800 389 8820, make an enquiry online or register for My Fire Fighters Charity now and visit the ‘Access Support’ tab.
You can also join our ‘Share Your Story’ Group in the app, by clicking on the ‘Groups’ tab, to chat to others who have received our support or enquire about sharing your own story.