1. The Ehlers-Danlos Support UK Breaking Down Barriers
Mya Choudry
Health & Helpline Advisor
Genetic Counsellor
Charlotte Clark
Communities Manager
12/11/2018

2. Who are we? Charlotte Clark EDS UK Communities Manager
Mya Choudry
EDS UK Helpline Advisor
I offer medical support over the telephone and for anyone worried about EDS.
I get a lot of queries regarding getting a diagnosis, advising on the best way to manage the condition and recommending what specialists would be ideal to see for that problem in particular.
Charlotte Clark
EDS UK Communities Manager
I manage the Communities Project which is funded by the Big Lottery Fund. This means that I manage 60 volunteers who hold support group meetings around the UK!
12/11/2018

3. What do we do?
Hold conferences on a variety of topics including – joint hypermobility, managing your EDS and diagnostics
Offer help to those seeking diagnosis, those needing to manage their EDS or those requiring emotional support
Social media – successfully running support networks through social media outlets
Support groups – running support groups for members of EDS UK
Fundraising – assisting individuals with fundraising in their local area
Awareness – spreading awareness of EDS through different outlets
11/12/2018

4. What are the Ehlers-Danlos Syndromes?
There are 18 different types of EDS, but the most common type is the hypermobility Spectrum Disorder/ Hypermobile EDS (hEDS).
Genetic condition with varying severity. Even within one family, phenotypic manifestation will be unique to the affected individual
Affects collagen synthesis in the body. The ‘glue’ that holds the body together doesn’t work properly. Many different types of collagen within the body
Affects the WHOLE body, Multisystemic!
12/11/2018

5. Hypermobility Spectrum Disorder
Also known as HSD – part of a spectrum which moves towards hEDS
Related to joint hypermobility and is a diagnosis to look for when others have been excluded.
It has a significant effect on health and must be managed appropriately – do not misjudge HSD as just being bendy it can be extremely debilitating
Not life-limiting or progressive but quick de-conditioning of muscle tone can cause difficulty in building it back up
Someone with HSD will have generalised joint hypermobility in 5 or more of their joints
Issues include:
Dislocations and subluxations
Chronic pain
Hyperalgesia (unusual sensitivity to pain)
Muscle weakness
Flat feet and scoliosis (in some)
11/12/2018

6. Day to day living 12/11/2018 www.ehlers-danlos.org
Individuals with EDS often experience days differently, some where they feel they may be able to get up and do some activities and some where the body flares up and causes extreme pain and fatigue. Some days they may be able to get up and do stuff and some days they may not be able to walk 100 yards to the toilet
Contributes towards issues in benefits and care that is needed
Experiencing brain fog causes issues with work and socialising (the inability to collect ones thoughts together)
Pain can also then lead to further fatigue
Individuals may experience several dislocations which the body then takes time to heal from
Individuals may have to give up school/ work and hobbies due to their illness
It can be debilitating and without proper management symptoms can worse and lead to wheelchair use and even being bedridden.
12/11/2018

7. Problems with diagnosis and treatment
There is a distinct lack of research surrounding EDS
Up until the March 2017 symposium there was not a clinical diagnostic criteria
It is a rare condition affecting 1 in 5000 but is thought to be underdiagnosed
Medical professionals are often unaware of it
It is often misdiagnosed as ME/CFS or Fibromyalgia
It is often trivialised as being ‘just bendy’
It can take individuals over 20 years to get diagnosed – whilst their symptoms worsen
There are currently no NICE guidelines but the EDS Society are looking to rectify this.
12/11/2018

8. Breaking Down Barriers project- why Breaking Down Barriers- Why we applied for funding1
It has been noted that EDS has a higher prevalence within the South Asian communities. 2
SA communities are known to have a higher prevalence of natural flexibility (so this makes sense) 3
However, looking on our membership records we have 0.001% non-Caucasian membership 4
Mya- having an SA on the team, made it easier to formulate a working plan to be able to engage the SA community
12/11/2018

9. Our Plan Access to these communities on a large scale
Places of worship- East London region
Understand our target audience
Simplifying our material
Translations into Urdu, Hindi and Bengali… Why?
44 places of worship
Awareness event at East London Mosque which holds a capacity of people- exposure
12/11/2018

10. Evaluation and Monitoring
Increase in Membership of SA community 01
Helpline log as a way of measuring SA contact 02
Monitoring the number of phone calls we have received 03
Google Analytics to see who has accessed the downloadable link from our website 04
Evaluation and Monitoring
12/11/2018

11. Successes thus far BBC Asian Network interview- Large scale exposure
People who heard the interview making contact with us
We have been met with interest and kindness at the places of worship we have visited so far
Hope to train volunteers from QMUL to help with awareness event, this will also spread awareness amongst science/med students at the university
Finally getting to the point of distribution and hopefully seeing the fruits of our labour
12/11/2018

12. Difficulties we have had
Considering our audience we had to re- evaluate our medical information and what forms we wanted to translate and print (i.e. leaflets/posters)
Lost in translation….. Awfully time consuming
Peer reviewing our medical information
Market research showed us that our info was not easy to understand
Information and plan overhaul! Back to square one
Distribution taking longer than anticipated
Difficulty in finding SA male volunteers to help with awareness event
12/11/2018

13. Thank you for listening!
Onwards and upwards we hope to continue strong in our efforts.
Thank you to Sylvia Adams for the opportunity to raise awareness of an important and life-debilitating condition!
Thank you for listening!
Fun Fact!
Dogs can get EDS too!
A main symptom for them is extremely stretchy skin!
They have to be looked after too
11/12/2018