Our goals are world-wide awareness—and a better quality of life for all who suffer from these conditions. We want to give hope to all those living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders.

Join me in supporting real change and raising awareness for EDS. Let’s support good in the world and make a difference. In helping me shed light to this genetic condition we will proudly continue working to provide education, research, awareness campaigns, advocacy, and care for the EDS and HSD population.

A little bit about EDS and my experience with it 💙

Ehlers-Danlos Syndrome is a rare genetic syndrome which effects the connective tissue. Due to the faulty connective tissue and collagen within the body it creates a lot of health implications and widespread joint pain and chronic issues. Think of EDS as if you bought your bodies muscoskeletal system from wish and the parts are all made unstable, wobbly, and fragile. As connective tissue is found everywhere in your body this results in issues found all over from the brain, eyes, teeth, heart, gastrointestinal, gynaecological, joints, immune system dysfunction etc. This condition is degenerative in nature meaning most people with this condition lose their mobility quickly over time and become increasingly worse. Currently there is no cure for this condition and little treatment options for the people suffering with it. More awareness and research is needed into the condition to further understand and assist people with managing this disability.

For me living with EDS has been a long and painful journey to understanding my body. Ever since i can remember i have always had issues with my body however never fully appreciated how much these issues were more severe than i thought. I always felt pain when holding pencils, when sitting, when standing, but put this down to being growing pains or even thinking this is what everybody feels. I was always sick as a child, always badly bruised, and always injuring myself often being labelled as clumsy. As time went on i learned to live with what i figured was normal and felt normal to me, until i entered my 20’s and the pain became increasingly harder to manage. It took years to figure out what was happening with me until i was diagnosed with EDS late last year and learnt that my joints are hypermobile and sublux, dislocate or pop out of their joints frequently. With little treatment options i had to adjust to the new normalcy of my new life and come to terms with the fact that my mobility was now decreasing. I find myself needing to see many different specialists and doctors to all manage different aspects of the one condition, meaning managing this illness is extremely expensive and furstrating. Due to lack of treatment i solely rely on specialised physical therapy, medicine, heat, rest lots and lots of rest, and adjusting my lifestyle accordingly to manage my condition and to have any form of life. Everyday of my life there is pain with every movement and every action comes pain and exhaustion, as my body desperately works overtime to keep my joints in place. Some days i can be hopeful and live with this condition, other days it feels unfair and frustrating. I hope one to see some more research done to help ease the frustration of this condition. This is my hope and this why i feel passionate about helping to raise funds and spread awareness.

My hope is to help to put a spotlight on this condition in hopes that one day in my life time, or perhaps at least in my children’s life time that some more research and real treatment options can be discovered. Just a small donation will go a long way to helping me meet my goal for The Ehlers-Danlos Society, if unable to dontate please share instead to further raise awareness!

Thank you 💙