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Did you know...all our support groups are run by Area Coordinators who volunteer their time to organise meetings all over the country. Our Area Coordinators are from all walks of life including some who suffer with EDS, to those who care for someone with it. Without our volunteers, the support we provide to you would cease to exist, so we are incredibly grateful for the invaluable work they do.
We have over 100 groups online and face to face, with the aim to provide safe, friendly environments where members can meet others, listen to people’s stories and learn from each other. All of our support groups also have a closed regional Facebook group for members only.
We are very grateful to all of our funders who help pay for the meetings, training of our volunteers and much more.
West London
Monifah and Helen
Your West London volunteer Area Coordinators are Helen and Monifah
Monifah: I have Hypermobile EDS & Sprengles deformity each which play hand in hand with each other which has meant I’ve spent the last ten years trying to adjust to my new normal and at 20 years old that hasn’t been easy. My goal for being area coordinator for West London is to help any young people feeling misplaced or confused with finding a way forward. Monifah X
Helen: My name is Helen and I am really happy to be joining as an area co-ordinator in West London. I have lived in London longer than I have lived anywhere else, but my accent is still very Scottish! I have been living in West London for the last 6 years.
I have Hypermobile EDS, as well as a few co-morbidities, including Orthostatic Hypotension and ADHD. I was diagnosed in 2021, aged 41, after a lifetime of symptoms and unexplained pain and illness. Like most of us, I’m constantly re-evaluating what I can do and how much I can do, but it’s helped by finally knowing what is happening with my body.
I work for a charity, and I am a qualified trainer. I train alongside people with intellectual disabilities and/or autism, so making sure they are included in conversations is a passion of mine. I also am very interested in neurodivergence in general, and even more so with how it is linked with connective tissue disorders.
I’m really looking forward to meeting some fellow Zebras in West London.
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group
Please note that Volunteer Area Coordinators may not get back to you immediately.
If you need to talk right now, whatever you’re going through, there are people you can talk to any time. You can:
call Samaritans on 116 123 (UK-wide)
text SHOUT to 85258 (UK-wide)
call C.A.L.L. on 0800 132 737 (Wales only)
These services are for anyone who’s struggling. They won’t judge you.
They’re free, they’re anonymous, and they’re always open.
There are currently no meetings in the diary for this support group. If you have selected to receive notifications on this support group we will notify you when one is organised. You can update what Support Groups you are notified about in your member profile.