Support Groups

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 50 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 for a Big Lottery Fund grant through the National Lottery which helps pay for the meetings, training of our volunteers and much more.

Balham (South LDN)

Vacancy

Contact group

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.

Central London

I have Hypermobile EDS. My working life has included being a journalist and a teacher, but a few years ago the condition became too disabling and I took medical retirement. Now I concentrate on voluntary projects and I’m really pleased to be the Area Coordinator for North London.

The North London area support group comprises a broad swathe of London north of the river, from Uxbridge in the West to Ilford in the East. My aim is to continue creating a wonderful active support network across the area. Meetings are friendly and relaxed, where people can get to know their peers, swap tips and experiences. In addition I hope that by working together we can raise awareness and funds to support EDS.

I am always contactable via phone, email or through our local Facebook page, please don’t get hesitate to get in touch if you’d like to discuss something or if you just need a sympathetic ear.

Date: February 16, 2020

Start: 1:30 pm

Finish: 5:00 pm

Venue: UCL School of Pharmacy, 29-39 Brunswick Square, WC1N 1AX

Additional info: Nutritional Therapist Tracey Randall will be talking to us about her significant experience treating EDS gut issues, POTS and Mast Cell Activation Disorder. Tracey is a registered Nutritional Therapist in private practice who is well regarded by clinicians such as Prof Kullar & Dr Lolseggreb, both of whom refer patients to her. Her talk will cover topics such as digestion, nutritional deficiencies, tiredness, SIBO and the different dietary approaches that can be taken - low histamine, FODMAP etc. Doors open from 1:30. The talk will start at 2pm and will aim to finish about 4pm. We have the room until 5pm to allow for some mingling time. The hall sits 90 people, so no need to book just turn up. Useful info 1. The meeting is on a Sunday so you can drive in and park. More info: http://maps.camden.gov.uk/parking.aspx?area=WC1N+1AX&UPRN=5083545 (NB spaces can be hard to find at any time though) 2.The venue is a very close to Russel Square tube (Piccadilly Line) but also not far from Kings Cross which has step free access. 3. The Maplethorpe Lecture theatre is on the ground floor and fully wheelchair accessible. Disabled toilet facilities. 4. Assistance animals welcome but no pets please.

Map:

Croydon

Hi

My names Nicci, after years of joint related issues, I was finally diagnosed with EDS and other associated conditions at the age of 23.

I have always enjoyed helping others and realised that I wanted to be able to help others with EDS, so I qualified as an orthotist/prosthetist.

I now spend my days running orthotist clinic’s in and around the surrounding areas of London. I specialise in biomechanics and make/prescribe a range of made to measure and off the shelf orthoses, to help alignment/posture, walking and reduce pain.

I’m very passionate about improving the quality of care and am active in creating more awareness around EDS and the care available.

I’m looking forward to being the Croydon area coordinator and growing the EDS community.

I’m very motivated, as there was a lack of support when I was diagnosed, so am delighted to be able to give the support, that I didn’t have to others.

I will be running support groups within the Croydon area, but am also able to do 1:1 if preferred, within local coffee shops.

I will also be helping on the medical advisory panel for any orthotic advice or concerns, so if you have any questions give me a shout.

Date: January 25, 2020

Start: 12:00 pm

Finish: 2:00 pm

Venue: Wallington Library, Shotfield, Wallington SM6 0HY

Additional info: Croydon support group: mindfulness course January- June- Living with pain and illness We are very excited to announce our first 8 session mindfulness course Please read all the below information and how to sign up as we have very limited spaces. to sign up for the course: there are limited number of spaces, so early sign up is essential. Please message myself using this link. https://www.ehlers-danlos.org/ac-contact-page/?group=4339 A short sign up questionnaire will be sent out which will need to be completed and returned prior to the course. Anyone whom doesn’t sign up will not be able to attend, due to the room capacity fire safety regulations. If you have signed up and then found that you are unable to attend, it is important that you message me to let me know, so that your space can be given to someone else. What is mindfulness: Mindfulness can reduce chronic pain by 90 per cent. (quoted from Psychology today: Posted 9th January 2015) Can Mindfulness Meditation Really Reduce Pain and Suffering? Living with chronic pain and illness can be intolerable. But it’s not just the pain that hurts; your mind can start to suffer as you desperately try to find a way of escaping. It’s only natural to want to fight back against pain and illness in times such as these, but what if this struggle actually made your suffering worse? What if it was more effective to explore the sensations of pain and illness as they rose and fell in your body? This may seem like the worst thing imaginable, but the latest medical advances show that it can be more powerful than the most commonly prescribed painkillers. Such an approach forms the core of a new treatment for chronic pain and illness that is based on an ancient form of meditation known as ‘mindfulness’. Mindfulness meditation has been shown in clinical trials to reduce chronic pain by 57 percent. Accomplished meditators can reduce it by over 90 percent. Imaging studies show that mindfulness soothes the brain patterns underlying pain and, over time, these changes take root and alter the structure of the brain itself, so that patients no longer feel pain with the same intensity. Many say that they barely notice it at. Hospital pain clinics now prescribe mindfulness meditation to help patients cope with the suffering arising from a wide range of diseases. How does it work: A typical meditation involves focusing on different parts of the body and simply observing with the mind’s eye what you find. This allows you to see your mind and body in action, to observe painful sensations as they arise, and to let go of struggling with them. pain comes in two forms: Primary and Secondary. Each of these has very different causes – and understanding this gives you far greater control over your suffering. In recent years, scientists have begun to work out how the mind’s pain amplifier is controlled, but more importantly they have discovered ways of turning down the ‘volume’ control on suffering. It turns out, the human mind does not simply feel pain, it also processes the information that it contains. It teases apart all of the different sensations to try to find their underlying causes so that you can avoid further pain or damage to the body. In effect, the mind zooms in on your pain for a closer look as it tries to find a solution to your suffering. This ‘zooming-in’ amplifies pain. Brain scans confirm this. Mindfulness soothes the circuits that amplify Secondary pain and you can see this process happening in a brain scanner. In effect, mindfulness teaches you how to turn down the volume control on your pain. And as you do so, any anxiety, stress and depression that you may be feeling begins to melt away too. Your body can then relax and begin to heal. On top of these benefits, hundreds of scientific trials have now shown that mindfulness meditation is extremely good at relieving anxiety, stress, depression, exhaustion and irritability. Memory improves, reaction times become faster and mental and physical stamina increase. In short, regular meditators are happier and more contented than average, while being far less likely to suffer from psychological distress. About the instructor: Peter Laurence : I am a retired lecturer and teacher and now a Mindfulness instructor in the MBSR (Mindfulness Based Stress Reduction) programme. I first experienced meditation as a way to help with my mental health in the 1970s, and have meditated ever since. I completed the 8 week MBSR course, as personal development and I enjoyed the course and could see the benefits of it, that I decided to study to become a Mindfulness Instructor. I am a volunteer at Mind in Croydon, delivering the MBSR programme, in bespoke sessions, to their service users. Feedback has included, that through Mindfulness, sleep patterns have improved, some have reduced their medication, and many have reported they can now cope with the feelings of being anxious, and/or stressed and/or overwhelmed and lead a better quality of life. The changes in their lives are significant and amazing. I am working with Merton Social Services in helping foster children with their experience of passed trauma. I am also involved with, and helping set up, the delivery of MBSR for adults and DotB mindfulness courses through the Social Prescribing NHS initiative, based with Croydon GP surgeries. Through this work people have fed back their improvement in dealing with stress, PTSD, chronic pain, anxiety and are able to lead an improved and healthier life. When you enter your library, please make your way to the lifts or the stairs The room is on the 1st floor directly opposite the lifts. The room is the comfortable room with comfortable chairs and a piano There is a hot water tap and fridge which we have us of The venue has disabled access (ramp) and disabled toilets Car parking: there is a car park with loads pf spaces connected to the library parking for 2 hours cost up to £2.00. There are lots of free disabled parking spaces There is also another car park directly opposite this one there is free car parking up and down the side roads which is a short walking distance from the venue and a train station near by. Buses 410, 151, bus stop called shotfield – this stops directly at the door of the library Buses 127, 151, 157, 410, 455, 463, 612, 627, 633 stop at Wallington town centre, this is less than 5 minutes’ walk away from the venue

Further information can be downloaded here

Map:

Dagenham (East LDN)

Nikki Casey

Contact group

Volunteer vacancy

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.

North London

I have Hypermobile EDS. My working life has included being a journalist and a teacher, but a few years ago the condition became too disabling and I took medical retirement. Now I concentrate on voluntary projects and I’m really pleased to be the Area Coordinator for North London.

The North London area support group comprises a broad swathe of London north of the river, from Uxbridge in the West to Ilford in the East. My aim is to continue creating a wonderful active support network across the area. Meetings are friendly and relaxed, where people can get to know their peers, swap tips and experiences. In addition I hope that by working together we can raise awareness and funds to support EDS.

I am always contactable via phone, email or through our local Facebook page, please don’t get hesitate to get in touch if you’d like to discuss something or if you just need a sympathetic ear.

Date: March 8, 2020

Start: 2:00 pm

Finish: 5:00 pm

Venue: Mind Haringey Station House 73C Stapleton Hall Road London N4 3QF

Additional info: Please come along to our next North London support group meeting. It'll be a chance to meet fellow local members in a relaxed, confidential environment with comfy sofas, chairs and tea. We usually start with some introductions and then move onto a general group discussion on a particular subject. Depending on the numbers turning up we may split into smaller groups. There’ll also be plenty of mingling time for you to have general chats one-on-one. Travel Info: Nearest Tube - Finsbury Park (Victoria, Piccadilly and mainline). Then take the bus W3 from stop B, approx 4mins, get off at Ossian Road. Nearest Rail Stations - Crouch Hill and Harringay (both 5min walk) Driving - There is usually space to park along Stapleton Hall Road just before the building near the petrol station (No parking restriction apply on this day). The venue is fully accessible. Entrance via the big blue door in the middle of the building in the picture above. Service dogs welcome but no pets please.

Map:

Waltham Cross

Amanda Moss

Contact group

My name is Amanda and I am the new volunteer Area Coordinator for the Borough of Broxbourne Community (all other area members are of course welcome here too).

My role involves providing support to you all in person, online or over the phone. Generally, we organise a minimum of 4 meetings a year. However, I would like to do more…if we decide we’d like to meet more often – max. 1 meeting every fortnight.

I am here to facilitate meetings and make sure that everyone’s thoughts and feelings are respected, and that everyone has the chance to talk.

I would really like for you to join me, so please come along. There are no expectations, simply turn up and go with the flow of what we all need. Subsequent meetings can be discussed as a group to what it is you would like where I will plan ahead to suit accordingly.

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.

Woodford

No current volunteer

Contact group

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.

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