Support Groups

Hi, my name is Alice!

I was officially diagnosed with Hypermobile Ehlers Danlos Syndrome in 2022, at the age of 20 years old. I had experienced various symptoms since adolescence, and began my diagnosis journey in my late teens. I guess, some may say, that I was ‘lucky’ to be diagnosed at such a young age. Since my hEDS diagnosis, I have also been diagnosed with PoTS, DDD, Occipital Neuralgia and even a few more – you would think I am collecting comorbidities!

I am currently a part-time Textile degree student, I am usually found sewing or crafting, and prior to my diagnosis, I wanted to pursue the dramatic arts. I absolutely love music, and attending concerts is something I will never say no to.

EDS UK have been very helpful in my journey, and the community members have always been welcoming – I wanted to give a little something back. I try to raise awareness through social media and thought it would be a great opportunity to become a volunteer. I have found the support groups very beneficial and I can only hope to bring someone else a bit more clarity and understanding surrounding the uniqueness of EDS

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.