This May I am participating in Dazzle Walk 2024 to raise money for The Ehlers-Danlos Support UK.

I got significantly ill when I was 21, as my body went into the 'pain' phase of (then undiagnosed) EDS and I developed co-morbidities such as POTS. My health affected my ability to work, travel, and socialise, resulting in isolation and at times severe mental illness. As with many EDS patients, I was not diagnosed quickly and was instead recommended ineffective or dangerous treatments, as well as told it was a manifestation of my anxiety. After about 6 years of severe illness, my POTS was diagnosed, and subsequently hEDS. I've now been diagnosed for two years, have been on medication for POTS since then, and have been able to learn about hEDS. I have no doubt my twenties would have been very different had I been diagnosed, treated, and even listened to about my EDS symptoms earlier.

I live in Scotland, where there is no EDS care pathway, meaning I cannot access care that would be possible in other parts of the UK, such as specialist physiotherapy, EDS-focused rheumatology, or any form of specialist care - all my care is done through a GP who does not have any specific training in managing EDS. This is the case across Scotland.

EDS UK have been campaigning, supporting research, and lobbying politicians for better services for EDS patients in Scotland. Recently they held an event at the Scottish Parliament which I attended, and they will soon be exhibiting their research there, to try to influence policy. They also provide support to individuals and their families, and have fostered community amongst a group of people who are often isolated.

Thanks to community on social media, awareness raising, and education, I am better able to manage my condition and have been able to do long walks for the first time since I was a child, and have even walked up significant hills for the first time in my life. I have to prepare by supporting my joints, taking electrolytes, wearing compression garments, taping joints, using a walking stick, and carrying as little as possible. I still experience significant fatigue, pain, and joint inflammation afterwards, but it has been exciting to explore the outdoors more, and I am able to balance the side effects with the rewards.

I am planning to walk 100km throughout May, recorded through Fitbit/Strava. Some of this will be little walks each day, such as to work, and some will be longer walks. I will also be sharing my progress on social media. I'm doing this activity to raise money for an organisation I see doing substantial work for EDS zebras, and in the hopes of getting expertise and care pathways in Scotland, and so future EDS patients have quicker diagnoses and effective management of our condition. I also hope to raise awareness of this condition, its impact, and the importance of adequate support and management.