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, 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)

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: September 7, 2019

Start: 2:00 pm

Finish: 4:30 pm

Venue: University College of Osteopathy, 275 Borough High Streeet, London, SE1 1JE

Additional info: Our guest speaker will be non other than our wonderful new Croydon Volunteer Coordinator, Nicci Rogers. Nicci Rogers is a qualified orthtotist/prosthetist who works in some of the specialist hospitals in and around London. Nicci specialises in EDS/hypermobility, diabetes, functional electrical stimulation, orthopaedic footwear, and dynamic lycra are just a few of her specialities/interests. Nicci Rogers was diagnosed with EDS over 10 years ago and uses her knowledge to help others, including being the charity's orthotics expert. How can orthotics help me? Orthotics is a medical speciality that focuses on the design and application of orthoses. An orthotic is an externally applied device, brace or support which are designed to provide the following: •Correction/prevention of a physical deformity •Reduce the risk of injury •stabilisation of joints •Reduction of pain •Improvement of mobility •Reduction of instability The presentation will run approx. 1.5hrs with lots of time for Q&A session at the end. The presentation will be broken down into 4 sections: 1)What is orthotics and how can orthotics help me? 2) List of orthotic devices assessments available on NHS 3) Products online, are they good or bad for me? 4) Instability orthotic products – demo of a range of products that everyone can try on. Closing - Q&A session Getting there University College of Osteopathy Lecture theatre, ground floor, near the main entrance. Nearest tube/train stations: Borough & London Bridge Useful info The venue is wheelchair accessible.

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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: July 27, 2019

Start: 12:00 pm

Finish: 2:00 pm

Venue: Wallington Library, Shotfield, Wallington SM6 0HY

Additional info: please RSVP to come to the event, please don't feel that you need to attend once you have RSVP. As we know how daunting a first meeting can be. But please RSVP as we have to count potential numbers for the venue. Nutrition workshop Raquel is a registered nutritional therapist with the British association for applied nutrition and nutritional therapy, she is also a member of the complimentary and natural healthcare council (CNHC). Raquel became interested in nutrition when her own health declined a few years ago. After getting nowhere in the medical world, Raquel started to look at her diet. She eventually found a nutritional protocol which helped. For Raquel this was a huge eye opener into the healing power of foods which caused Raquel to re-train, her final year portfolio was selected to represent the outstanding work in the year’s accreditation. Workshop topics will include: • Briefly going into current research into EDS gastro issue and how it relates to the diets within the workshop • Low fodmap diet • Low histamine diet • Nutritional health stage 1-2 • How to have a balanced diet, when so many foods are excluded • Foods to avoid with digestive issues • Q&A- general questions – so that everyone can benefit from the information. • If time goes to plan, Raquel will try and cover: • How to maintain weight with digestive issues • How to lose weight with digestive and mobility issues • Presentation will last approx. 1.5 hrs Please RSVP- due to room allowance Venue: Wallington library Shotfield Wallington SM6 0HY 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 nearby. 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

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Date: August 24, 2019

Start: 10:00 am

Finish: 12:00 pm

Venue: St Augustine Church, St Augustine Avenue, South Croydon, CR2 6BA

Additional info: please RSVP to come to the event, please don't feel that you need to attend once you have RSVP. As we know how daunting a first meeting can be. But please RSVP as we have to count potential numbers for the venue. entrance: you can enter through the side door directly opposite the car park or through the main door, with disabled ramp we have the small room, located next to the kitchen which we have full access to there are 9 available spaces within the church car park which is free and free parking up and down the road there is a bus stop at the bottom of the road 3 minutes walk buses which stop here are 60,166, 407, 466, 312

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Date: September 28, 2019

Start: 12:00 pm

Finish: 2:00 pm

Venue: Wallington Library, Shotfield, Wallington SM6 0HY

Additional info: please RSVP to come to the event, please don't feel that you need to attend once you have RSVP. As we know how daunting a first meeting can be. But please RSVP as we have to count potential numbers for the venue. Stress release workshop- Using tapping/faster EFT Workshop will cover: 1. How our minds work 2. What is stress and why, so we experience stress 3. How to use tapping for stress release 4. Tapping for emotional or physical pain 5. Demonstration 6. Q&A 7. Resources You will learn how to tap on yourself and change your emotional state to feel better EFT tapping is a quick and effective method of releasing negative thoughts, emotions and memories. It is a self-empowering thinking system that addresses the mind-body connection which can also result in the relief of physical pain. We use Tapping and a lot of other tools to create changes such as: • Helping you to move past negative events or traumas • Helping you de-stress and overcome any fears or phobias • Changing unwanted behaviours into behaviours which support you better • Getting rid of limiting beliefs that are holding you back from what you want • Changing the relationship with your body and /or pain that you are feeling Our practitioner has been using EFT for over 6 years and is a qualified level 3 fasterEFT, whom trained under the founder Robert G Smith. Please RSVP if you would like to attend due to room allowance. Venue: Wallington library Shotfield Wallington SM6 0HY 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

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Date: October 12, 2019

Start: 12:00 pm

Finish: 1:00 pm

Venue: Harris Academy Purley, Kendra Hall Road, South Croydon, CR2 6DT

Additional info: please RSVP to come to the event, please don't feel that you need to attend once you have RSVP. As we know how daunting a first meeting can be. But please RSVP as we have to count potential numbers for the venue. Croydon’s first gong bath (meditation) also known as a sound bath or sound therapy. What happens during a gong bath/gong meditation: There is no water involved. It is called a gong bath because you will be bathed in therapeutic sound vibrations from the sidereal moon gong as well as other healing instruments such the Himalayan singing bowl and chimes. You don’t have to do anything except lie back and listen to the sounds and let them take you on a relaxing journey. A gong bath will increase your theta brain waves causing deep meditation and psychic awareness. Each cell in the body will feel the harmonising vibrations therefore encouraging our innate ability to self-heal. What are the benefits of a gong bath: • powerful tool for reducing stress, anxiety and mental emotional blockages • deep relaxing experience • self-healing • find inner peace practitioner: our practitioner Dipika is a BWY Diploma Level 4 yoga teacher, Gentle years yoga teacher, Gong Practitioner, Total Yoga Nidra Teacher and Facilitator. Dipika found from the first strike of the gong at a local gong bath where she was instantly captured. “The sound took me on an amazing journey which left me profoundly relaxed”. From that moment on Dipika knew she had to learn the art and share this with others. What to bring with you: Please bring with you: 1. mat(s) 2. pillow 3. blanket(s) 4. anything else you need so you can lie/sit comfortably 5. Wear warm clothes as you will cool down. Who is it not suitable for: It is not advised for people with audiogenic epilepsy, tinnitus or if you are in your first trimester of pregnancy. please arrive on time, or you may not be allowed entry Please RSVP Venue: Harris academy Purley Kendra hall road South Croydon CR2 6DT Enter from the main entrance and turn left and follow the sides for activity room Free on site parking, enough for over 60 people. Including disabled bays at the front of the school. Bus stops at the top of the road (this is 3 minutes walking distance) Buses are 455, 405

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Date: October 26, 2019

Start: 10:00 am

Finish: 12:00 pm

Venue: St Augustine Church, St Augustine Avenue, South Croydon, CR2 6BA

Additional info: please RSVP to come to the event, please don't feel that you need to attend once you have RSVP. As we know how daunting a first meeting can be. But please RSVP as we have to count potential numbers for the venue. entrance: you can enter through the side door directly opposite the car park or through the main door, with disabled ramp we have the small room, located next to the kitchen which we have full access to there are 9 available spaces within the church car park which is free and free parking up and down the road there is a bus stop at the bottom of the road 3 minutes walk buses which stop here are 60,166, 407, 466, 312

Map:

Date: November 16, 2019

Start: 12:00 pm

Finish: 2:00 pm

Venue: Wallington Library, Shotfield, Wallington SM6 0HY

Additional info: please RSVP to come to the event, please don't feel that you need to attend once you have RSVP. As we know how daunting a first meeting can be. But please RSVP as we have to count potential numbers for the venue. No barriers mindset workshop The workshop will be delivered by Cassandra A Campbell. Cassandra has been living with hypermobile EDS and Fibromyalgia since she was a teenager, but wasn’t diagnosed for over 20 years. Having lived with the effects of these conditions from childhood to adulthood, she is more than aware of what others may experience and has developed her own coping strategies, and learned to embrace life, despite the challenges they bring. Cassandra is a Personal Growth Life Coach who focuses on helping people eradicate mental, emotional and physical barriers; specifically those with chronic illnesses. She has created a 6 step programme to support people in transforming their mindset to create a better quality of life for themselves. She has also been working with young people to improve their emotional development as a mentor and workshop facilitator for nine years. Committed to encouraging and supporting self-awareness, self-love and self-acceptance, she believes that, if armed with the right tools, each individual can transform their life into one that is abundantly filled with happiness, positivity, prosperity, love, good health and wellbeing. Additionally, in order to raise awareness about EDS, she has created a YouTube channel called EDS Unplugged, alongside Marcia Brock, a fellow EDS-er. Together, they also deliver confidence-building workshops to EDS UK teen members. Cassandra is passionate about raising awareness and empowering others to live the best life they can. The workshop will last approx. 2 hours, please arrive a little early so we can start on time Subjects covered: self-worth, self-love and confidence Due to the perceived popularity of the event, Please RSVP if you would like to attend due to room allowance. Venue: Wallington library Shotfield Wallington SM6 0HY 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

Map:

Date: December 7, 2019

Start: 12:00 pm

Finish: 2:00 pm

Venue: St Augustine Church, St Augustine Avenue, South Croydon, CR2 6BA

Additional info: please RSVP to come to the event, please don't feel that you need to attend once you have RSVP. As we know how daunting a first meeting can be. But please RSVP as we have to count potential numbers for the venue. Croydon’s last support group meeting of 2019 Christmas gathering entrance: you can enter through the side door directly opposite the car park or through the main door, with disabled ramp we have the small room, located next to the kitchen which we have full access to there are 9 available spaces within the church car park which is free and free parking up and down the road there is a bus stop at the bottom of the road 3 minutes walk buses which stop here are 60,166, 407, 466, 312

Map:

Dagenham (East LDN)

Hi I’m Kelly.

I am a 34 year old stay at home Mum. Myself and my eldest both suffer with Hypermobile EDS, so I know how it can affect family life. In my spare time I enjoy live music and comedy, I live to laugh and find the fun in most things – especially living with EDS. In my past life I was a pub manager, and am always first on the dancefloor (even if I regret it later!)

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.

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

Hiya,

My name is Ria and I was diagnosed with Ehlers-Danlos Syndrome along with a few other related conditions.

I’m eager to get to know you all and cannot wait to expand the EDS community, whether it be something that affects you directly or someone you care about.

I look forward to seeing you at upcoming Support Group Meetings or to just have a chat if you feel you need someone to talk to. I’m also equally keen to get to know some more people in the community and raise awareness about the charity.

– Ria

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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