Support Groups

I’m Ali and I am pleased to be able to facilitate the support group for Hinckley and Nuneaton.

I have had constant pain and subluxations since childhood and several slipped discs in my 20’s ; I was initially diagnosed in my early 30’s informally by my GP at the time. After many more years of health issues and medical professionals failing to join the dots, I was diagnosed by a Rheumatologist following an MDT, at the age of 41 with HSD then hEDS.

Although it was a relief that it clearly wasn’t “all in my head”, it was also very frustrating that so much time had gone by and I felt along with it, everything I used to enjoy doing, for both work and hobbies.

I was one of the first attendees of the local support group and found the meetings to be incredibly beneficial – speaking to others who totally understand this chronic condition and all that it brings. When the opportunity arose to help the group to continue when Helen moved away, I embraced the chance – I understand first hand how valuable it is.

I begin this chapter 7 years into being diagnosed, and like all Zebras, learn something new every day. I look forward to meeting you.

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