Some of you may or may not know that I am suffering from an incurable connective tissue disorder called Ehlers Danlos Syndrome. EDS causes chronic fatigue, widespread chronic joint and muscle pain, subluxations and dislocations. As connective tissue is in the entire body, I suffer with many stomach, bladder complications and other comorbidities. However, today I am writing this post because Ehlers Danlos Syndrome has progressed.
I have a score of 8/9 on the Beighton Scale and have been listed in the category of high risk of fractures. Last year, I broke both my ankles and now I wear ankle braces. However, I still can’t walk very far without days on end resting in bed. I am meant to enrol on the 3 week Stanmore Physical Rehabilitation Programme, trying to ensure I am strong enough to complete it and visit the London Hypermobilty Clinic.
I missed a lot of my work placement from being in hospital and now I am too sick to work. I am now kindly asking for donations to prevent me going into a wheelchair and double ankle fusion surgery. I require a pair of SMART crutches (£140) and Push Care knee braces (£140). I also would benefit from a neck brace, wrist braces and finger splints but these are not as urgent.
I would also like to thank anyone who supported me with my EDS art fundraiser. Progress is slow because I have been in an out of hospital but I am still creating art and donating 50% profit to Ehlers Danlos Support U.K. So far I have raised £72 for this charity, and buy my art materials on Amazon Smile to ensure Amazon donates a bit more to the charity.
I will continue to donate 50% profit from any future art I sell, and hope to use the other 50% profit towards my mobility aid fund. If you would like a custom piece or an EDS/ invisible illness awareness bracelet, please contact through firstname.lastname@example.org or through Etsy.
I am currently selling awareness bracelets and asking for donations (minimum £3 in the U.K. and £10 in the USA) to also help cover the postage. You will need to PM me your address to my email.
Thank you for taking the time to read my story. I am very passionate about raising awareness of EDS and you can find related blog posts here
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Do you use mobility aids for a chronic illness? – If so I would love to hear about them below.
Invisible Illness Awareness Jewellery
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