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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