EDS Awareness Month | How You Can Help

For the fourth and final post in this little EDS series I wanted to put together a small collection of charities and appeals that you can help with by reading, sharing or donating/fundraising – or by doing all of them!


EDS is a complex illness, as I hope I’ve explained in previous posts. Because of this there is currently no cure, nor is there an identified cause for several of the types. Much more research must be done in order for adequate testing to be a reality or for a cure to even be a possibility. There are many charities who are dedicated to helping EDS sufferers, as well as charities who specifically aim to support sufferers of certain conditions that can be caused by EDS (such as PoTS, Chiari malformation etc.) If you’d like to support these charities then you should definitely do your research and decide which you’d like to help most – of course, all of them are extremely worthwhile!


20140404_184021 (1)For the purpose of this post I’d like to share two of the EDS charities that have significantly helped me. They are filled to the brim with compassionate, dedicated, knowledgable people – many of whom suffer from EDS themselves.


  • Hypermobility Syndromes Association – This was the first hypermobility charity that I came across, and I’ve had contact with them several times in the past few years. Each and every time they have been tremendously helpful, not only in supporting me after receiving my diagnoses, but also in helping me to get those diagnoses. They don’t just support EDS sufferers either, but instead cover a range of hypermobility syndromes, such as Marfan Syndrome.
  • Ehlers-Danlos Support UK – These guys know it all when it comes to EDS, and they work their bums off to learn more and to support the members of the zebra community. I did some fundraising for them in 2014 and they were so, so supportive. They’re the kindest and most understanding people.


Ehlers-Danlos Syndrome is a complex illness that can lead to many other complex conditions. It’s very misunderstood all around the world. Because of this there aren’t any EDS-equipped neurosurgeons in the UK, meaning that sufferers of conditions such as Chiari and craniocervical instability have to raise the funds to travel to the USA for treatment. The following links are to fundraising campaigns to get two wonderful women the surgeries they desperately need. I hope you can read their stories and share them amongst your family and friends, and donate if you can.


Thank you <3


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