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

You can follow along my progress on my Instagram @longcovidlucy

I was Diagnosed in 2021 with hypermobile Ehlers Danlos Syndrome. A multi systematic connective tissue disorder that impacts my whole body. As a genetic disorder, this is something I was born with, however; countless times I was either misdiagnosed or my symptoms were blamed on 'growing pains' and/or anxiety.

EDS manifests in my body with: chronic pain, joint subluxations and dislocations, chronic fatigue, Gastro issues, palpations and POTS, immune deficiency, skin fragility, migraine disorder, TMJ disorder and mast cell issues

EDS is not something that can be cured due to the complex nature of the syndrome it is more about management of each symptom.

Many of you know I am an ambulatory wheelchair user, meaning I can walk, just not very far! To give perspective, my physio says to limit walking for a maximum of 6 minutes. I still end up in a lot of pain and normally before 6 minutes my POTS symptoms kick in - elevated heart rate, dizziness, sweating and nausea.

I am giving myself the month of May to complete 10K, so that I can safely achieve my goal. This may not seem very far to most of you, but for me this will be a huge challenge, but one I am actually quite excited for!

I want to raise money for EDS as more education, recognition and awareness is needed so that we have earlier diagnosis and better treatment options. Due to chronic illness I am in and out of variety of NHS clinics, it is rare that I meet a medical professional that has 1- heard of EDS or 2- understands the complex issues associated with the syndrome.

The money it raise will go to Ehlers Danlos support UK who is working tirelessly to raise awareness within the Government and make changes

We are in a cost of living crisis, so please only donate if you can - every little helps!

I will be joined by my lovely mummy Mags and my pup Milo, with my trusty walking stick.

Thank you in advance for your support. Wish me luck!

Lucy, Mags and Milo x