Finding the right Physiotherapy for me has helped my journey

By Emma Daniels

I was diagnosed with Ehlers-Danlos Syndrome in 2022, following a misdiagnosis of Lupus in 2021, I had worsening symptoms during my childhood and teen years. As a child, I was often told “there is always something wrong with you”; I had to give up gymnastics at age 11 due to an injury. I would get pains in my knees that would leave me in agony, my parents took me to see the doctor quite a few times about this but they were named “growing pains” (I later realised that these were partial dislocations). As I got older, the list of symptoms grew – headaches, nausea, joint pain, rashes, infections, fatigue, “clunking” joints, hair loss, poor circulation. Unfortunately, like many in my position, I was already in a wheelchair by the time I got correctly diagnosed, due to the lack of awareness about my condition leaving them unable to “join the dots”. At this point I could walk very short distances independently, but due to the dislocations and joint pain I was suffering, I couldn’t work, see my friends or go to medical appointments without using my wheelchair. I started physiotherapy in 2021, and despite my best efforts, I lost the ability to walk and stand in early 2023 as my knees were dislocating whenever I was bearing weight or walking. Due to this, from early 2023 to the present day, I am a full time wheelchair user.

Following my diagnosis wit h hEDS, I have also been diagnosed with co-morbidities including Postural Orthostatic Tachycardia Syndrome and more. I suffer frequent dislocations of my knees, hips, shoulders, elbows, and other joints. Some of these dislocations (in my hips) have left me momentarily unable to move or feel my legs below my waist until I get the joint back into place. Throughout all of this, despite how hard it was and is, my goal has always been to look for something good in everyday and to make the most of everything, focusing on what I can do rather than what I can’t.

In August 2023, I got fitted for a pair of plastic custom fit AFOs (ankle-foot orthotics) by London Orthotic Consultancy (LOC), with the aim that these would hold my legs in a position where my knees wouldn’t dislocate when weight-bearing. Unfortunately due to the extreme laxity of my joints, the plastic AFOs were not strong enough to stop my knees from dislocating, so LOC created a custom fit pair of pre-impregnated carbon fibre AFOs which have worked wonders for me.

In July 2024, one of my friends recommended Able2B to me, having seen my physiotherapy progress videos on my Instagram story. Able2B is a unique service in Norwich in England aimed to improve outcomes for people with disabilities. Set up by Rachael Hutchinson (consultant orthopaedic surgeon) and Jon Thaxton (former British and European boxing champion), they bring together their experiences and expertise to use sports medicine principles to give everyone the chance to be the best they can be. I went along for a trial session and fell in love with it from the get-go. Physiotherapy had always been hard for me, because of the “medical feel” of it, so being able to do physiotherapy in a gym environment at Able2B was an absolute game changer for me.

Prior to starting at Able2B, I had pretty much lost hope on ever being able to walk again. Within the first few months of going to Able2B, I had made more progress than I ever could’ve imagined or hoped, we worked on standing up independently (without AF

Os) and also in AFOs, and even took my first few steps in my AFOs – something I never thought I would do again!

I pride myself on my determination, and thanks to a lot of hard work and the correct support from Able2B, my family and friends and an amazing community online, I am finally progressing.

Currently, I really enjoy my hydrotherapy sessions at Able2B where I get to practice my front crawl in their heated swimspa which is equipped with currents, sensory lights, bubbles and music. I also do a lot of work on my midrange both in water and on land, to try to reduce the frequency of my dislocations. I really enjoy practicing my walking with my AFOs, I do a lot of work on “the curve” (self propelled treadmill) to work on my gait and pace of my walking; and I love working on my balance in different and fun ways, such as practicing boxing with Jon Thaxton, walking outside on uneven paths, and using various machines at the gym.

I’ve also had a couple of sessions of rebound therapy which I find really fun, and this hugely helps my balance and also my vestibular system.

I am still a full time wheelchair user and I have got a long journey ahead of me. I hope that in the coming months, with a lot of hard work I will become steady enough on my feet to practice walking around the house (with AFOs) without supervision. Regardless of this, I see my wheelchair as a tool rather than a hindrance. My wheelchair gives me freedom and allows me to do things that I otherwise wouldn’t be able to do; such as working, going out with friends, going shopping, and living my life.

Positivity and hope are huge parts of my life and are so important to me. About a year into my health declining, I decided to start a list of the good parts of each day. I found that, in a time when I was experiencing such negative symptoms and watching my health deteriorate, looking for these “glimmers of hope” helped to reframe how I looked at life. I am a big believer that the little things are worth celebrating, and that sometimes the little things in life are actually the big things that go unnoticed. I still continue this habit to this day, in the form of writing a gratitude journal at the start and end of each day; and my goal is to always look for the good in everyday, whether that be a nice cup of coffee or the sun reflecting off the trees or winning the lottery, there is good in everyday.

I first started posting my journey on social media (@emmadaniels.x) to document my progress with my rehab and physiotherapy through little video clips on my story. Sometimes when you’re on a long journey such as relearning how to walk, it can be difficult to notice progression so having video documentation has helped me so much. In the last 4 months, I have been uploading daily videos of my progress to Instagram reels and I’m so grateful that we have built such an amazing and supportive community on Instagram and TikTok. I hope that my page gives people, who may be in a similar position to me, hope and reminds them to always look for the good in everyday.

My article on the BBC news website is here

Emma Daniels