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View our privacy policy21-year-old Emma, who has Ehlers-Danlos syndrome, is learning to walk again thanks to bespoke carbon fibre AFOs from LOC Cambridge, dramatically improving her mobility and quality of life.
Having previously been misdiagnosed as having Lupus, Emma (who is now 21) was diagnosed with hypermobile Ehlers-Danlos syndrome in September 2022.
This condition is believed to affect in between 1 in 3,100 and 1 in 5,000 people in the UK. Emma had symptoms throughout her childhood years, one of them being ‘growing pains’ which, at their worst, would leave her unable to move her legs on the floor. These were not growing pains at all but dislocations.
She paid many visits to her GP throughout her childhood and teenage years as she suffered injuries which were never explained and would take ages to heal. The symptoms are very debilitating. People with the condition are prone to regular dislocation of joints which makes walking a challenge.
Following her diagnosis of hEDS, waiting times to be seen by the NHS were very long, so the family began to search for a private solution; Emma’s mum found the London Orthotic Consultancy online, and Emma also happened to be a follower of Super Sofia (another LOC patient) on Instagram.
By the time Emma came to our Cambridge clinic in August 2023, her condition had deteriorated to the extent that she was a full-time wheelchair user. A few months before, she had been able to walk about 20% of the time, and had only had to use a wheelchair for 80% of the time.
Emma was examined by Connor Mumford, Senior Orthotist and head of LOC’s Cambridge clinic. Emma presented with several complex symptoms. The initial solution, a knee brace and plastic AFOs, provided some support and improvement in her mobility. However, it was the prescription of a pair of pre-preg carbon fibre AFOs in June 2024 that was the real game changer. Because carbon fibre is both very strong and very light, Emma’s new AFOs provide tremendous support for her ankles without putting a strain on her knees.
“These AFOs have made such a difference, they keep my knees and hips in alignment, provide stability for my joints and are very comfortable. They’re making such a difference to my life.”
Emma
Hand in hand with her new bespoke orthotics, Emma is very grateful for the therapeutic support provided by Able2B Norwich, with whom she has been working since July 2024. Before this, Emma had been in physiotherapy since 2021 and not made any noticeable progress. Essentially, Emma is learning how to walk again; she has intensive sessions on Wednesdays and Saturdays, yet still manages to work three days a week.
Since then, Emma has been interviewed numerous times and has been featured on ITV East Anglia and the radio, spreading awareness about the condition and Emma is recording her journey on Instagram: @emmadaniels.x. She says: “It’s important to me to see where I started from and how far I’ve come, especially on such a long journey, it’s incredibly encouraging and everyone is incredibly supportive. Walking gives me so much joy.”
Emma is building up to an annual event hosted by Able2B in June called ‘Discover your ability’ and features a 1k course which can be completed in a wheelchair, with the aid of crutches or simply walking. Emma hopes to complete it with minimal reliance on her wheelchair.
“Connor has been great, very knowledgeable and, vitally, listens to what I am telling him about my condition and its many, many different symptoms; in direct contrast to the array of medical professionals I have seen in my life to date.”
Emma
If you have Ehlers-Danlos syndrome and believe you may benefit from a pair of bespoke orthotics, please contact us today to arrange a consultation.
Bespoke orthotics are a highly effective way to manage hypermobility, offering joint stability, improved mobility, and reduced pain and fatigue. They can also help prevent long-term postural issues and joint damage, while providing essential support for growing children to ensure healthy movement development.
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