Amelia McLaughlin
Amelia's EDS DAZZLE WALK
Fundraising for Ehlers-Danlos Support UK
Story
Myself and my friends will be taking part in the EDS UK Dazzle Walk. We will be donning our best zebra print and doing a 3k. This is to raise money for EDS UK, a charity who support people with EDS and HSD.
This charity is close to my heart as I myself suffer with Ehlers-Danlos Syndrome (EDS).
Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue.
There are 13 subtypes of EDS and EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling. Some types can also be life-threatening.
The different types of EDS are caused by faults in certain genes that make connective tissue weaker. This causes joint instability and dislocations, pain, lethargy, frail stretchy skin and problem with internal organs such as prolapse. EDS can also affect other body systems such as the heart and gut.
Why the zebra?
A group of zebras is called a Dazzle and the symbol for EDS is a a zebra. Medical students, like myself, have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis. However, sometimes when you hear hoofbeats it is a zebra. Therefore people with rare chronic diseases often spend years dealing answers and a diagnosis. EDS UK also helps those searching for their diagnosis.
EDS has massively impacted my life. It has forced me to rethink my career options, made me question my identity as both a medical student and as a young woman. It has also in many ways destroyed my body and impacted my self-esteem. However, it has also made me part of a community of unique and rare zebras who despite their own health issues, are always so supportive of each other. I would love to raise awareness for this condition as not everyone in my life, let alone enough people in the world, know it exists. If you have any questions about EDS I'd love for you to reach out to me, or look up EDS UK and The Ehlers-Danlos Society for more information.Living with an EDS or HSD is not always easy. We take comfort and pride in the strength and support of our community, which I have gained through EDS UK, and what we can achieve together. Together, we dazzle!
In my mind you don't just have to be a zebra to join the dazzle, so I am so grateful to my friends for joining me on this challenge. Lets hope my joints behave throughout :)
