Support Groups

Hi I’m Mary

I was born hypermobile my shoulder and ankles dislocated when I was born but strangely when I was child I was not diagnosed with anything until age 14 I had a year off school after a vaccination as they thought I had CFS? I couldn’t get outta bed, i blacked out a lot and my body was in pain, my digestive issues were awful I lost lots of weight and when I went back to school for the last year I could only cope with half days till I left, it wasn’t till after my 3rd baby (age 30) they diagnosed hyper mobility and FM (due to how the pregnancy and birth had been so bad).

I went to kings college hospital for 2 years under a specialist to help me cope and there a Dr said he thought I had EDS but nobody specialised in it in Hampshire at the time so it was never mentioned again. Since then they’ve found I have IIH (lumber puncture diagnose) and MCAS and now finally I was formally diagnosed as EDS at 40. I’ve never been able to work full time because of energy levels, blackouts and dislocations. I’m coming up to 50 I have 3 adult children and I’ve been happily married 22 years.

I really want to have a group where people can help each other especially people who haven’t got full diagnose as I know the sooner you get help the more you can adjust to living your best life!

I am contactable by email but I’m 50% deaf so no good with phone calls sorry! Im really looking forward to a chatty happy group and getting to know fellow EDS sufferers… let’s help each other. I’m Winchester based but I want people from Eastleigh and Southampton to join in as most of us are assigned to Southampton hospital anyhow – let’s make one big group where we can Relax and hopefully we will feel like a big family.

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