May is Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) awareness month. This year I have decided to join the “Walk ‘n’ Roll Challenge” to contribute towards the 120,000 Acts of Awareness target set by the Ehlers Danlos Society. Each pound raised as well as each kilometre walked this month will count as one act of awareness toward this global goal. Therefore, I have set myself the target to try and walk 250km over the 31 days of May!

I’m Aurore, 27 years old, music lover, primary school teacher, avid traveller, and I am hypermobile. Chronic joint and muscle pain have been a part of my daily life for around 10 years now. In February 2019, I was diagnosed with hypermobile Ehlers Danlos Syndrome. This basically explains my "bendier than average" body, my clicky joints, my constant clumsiness and ability to trip over perfectly flat ground and the fact that I can dislocate my jaw simply by yawning or drinking a shot without my hands. 😅

In 2017, I hit a low point in terms of physical pain and found myself unable to do a lot of the things I loved. I was scared, constantly worrying about tomorrow, and I started to lose hope. The toll pain can take on your mental health is something very often overlooked. I was terrified at how much worse my health could get every time a doctor pointed out my “young age”. It was a very challenging time and I am forever grateful to all the amazing people in my life who supported me throughout the years when managing my pain was something I thought to be unachievable.

Over the past few years I have tried different strategies, shared and listened to others’ experiences to try and find ways to learn about my body, understand my pain and try to gain back some control over my health. Getting a diagnosis turned out to be an important part of my journey as it helped me improve my own understanding of my body and accept my pain in ways I never would have thought possible. I am a lucky one in that I got my answer.

Many people can go their whole life without ever getting an answer. The tests, awareness, understanding and proper care and treatments are unfortunately still lacking for many people with Ehlers Danlos or on the hypermobility spectrum! Research is currently being undertaken to help assess patients and find the genetic markers associated with hEDS. In time, all this research should help everyone, including the medical community, better understand these conditions and find efficient ways to treat the symptoms they cause. For now though, finding support and effective pain management strategies is still a very complicated and personal matter for most people affected.

I am still slowly but surely learning. However, despite the unpredictability of my health and flare ups, I now feel free to make plans and hope for the best. I can picture a brighter future. I have hope. And I can explain to the people I love what goes on when I can’t smile through the pain. This hope is a feeling I wish any person suffering can get the chance to experience.

This is why I invite you, if you can and if you have any pennies to spare, to join me in raising awareness for Ehlers-Danlos syndromes and hypermobility spectrum disorders !

Help me support the Ehlers Danlos Society and all the people affected by these conditions by donating in exchange for some (potential) blood, (definite) sweat and (very likely) tears on my part! No matter how big or small the donation, down the line, every penny you give will help people who, like me, are hoping to live a better life by getting a better understanding of their condition and getting the right support and care.

Thank you for your support! If you want to know more about EDS and HSD, please visit the Ehlers Danlos Society website. If you wish to know more about my own experience of hEDS, feel free to ask me any questions. And finally, even more importantly : SPREAD THE WORD! 😊