May is Ehlers-Danlos Syndrome awareness month. I am hoping to raise some money for The Ehlers-Danlos Support UK who provide vital physical and mental support to patients and their families. I was diagnosed with Hypermobile EDS in September 2022, and this is a cause that is very dear to my heart. 

I make and sell jewellery and home decor using seaglass from local beaches. I am donating three items which I will send (UK only I’m afraid) to the people who make the three highest donations. The highest donation will receive this framed piece of seaglass art which features two people sat on a swing (retail price £20). The second highest donation will receive a sea foam blue tiny wrapped pendant necklace (retail price £12), and the third highest donation will receive this 10cm seaglass canvas (retail price £8). ADDITIONALLY: I am donating this framed plants canvas (retail price £15). After the 3 highest donors have been chosen, the remaining donors will be entered into a draw and whoever is picked will win this piece. The winners will be chosen at 5pm BST on 1st June. Please leave a contact method if you would like to have a chance at winning one of these items.

I’ve included the retail prices for information only: please give as much or as little as you can. Every penny makes a difference. Like I said, this is a cause which means a lot to me - please read on for my personal story if you are interested.

I was diagnosed with EDS in September last year following being misdiagnosed with Lupus for nearly a year, this is due to the lack of awareness of the condition and is something that unfortunately happens a lot more than it should.Throughout my childhood, I was very energetic - I was a gymnast, loved anything to do with water sports, and would jump at the chance to do anything physically challenging. I experienced joint pains, headaches, stomach issues and neck issues on occasion but the doctors were never able to link any of it together, and only "treated" the individual symptoms.

I saw a rheumatologist in late 2020 due to my joint pains being more prevalent, who said he was "unable to explain my joint pains" and discharged me. Two years ago this month, I began to decline - with my joint pains getting worse, my fatigue becoming more debilitating and my other symptoms getting worse. I was still able to do most of the things I loved but not as often as I wanted to. However as the new school year started, I had to reduce my days at school down to 3 days a week due to my fatigue and joint pain which was getting worse and worse. Some days I was unable to get out of bed at all. I thankfully was able to finish sixth form in 2022 with the use of a crutch, and sat all but one of my a-levels whilst on strong prescribed painkillers. 

As the year went on, my mobility got worse and worse as my joints became more and more unstable. I was then diagnosed with Hypermobile Ehlers-Danlos Syndrome, by which point my shoulders, fingers and hips were frequently dislocating due to the weakness of the collagen and connective tissue which holds my joints in place - EDS is a genetic condition which causes the collagen in your body to be very weak and flexible - this can effect your joints, organs, skin and much more. I now use a wheelchair whenever I leave the house and two crutches or my wheelchair around the house due to the pain and instability of my joints.

I work up at the hospital 4 days a week as, having experienced the patient side of things as well, I want to help patients as much as I can. I love singing and pottery painting and I also make jewellery and home decor using seaglass from local beaches. I find that this is a great way to relax but also incorporates occupational therapy (to keep my hands moving) into my daily life in a FUN way. Please donate what you can if you are able to and if you are not able to donate, please post this on your social media to help us to raise more money for The Ehlers-Danlos Support UK.