1. The Ehlers-Danlos Support UK Area Coordinator
Hi Everyone, My name is …… and I have been asked to come to talk to you about Ehlers-Danlos Syndrome, a connective tissue disorder which affects the entire body.

2. What will we be covering?
So what will we be covering… (read bullet points)
What is Ehlers-Danlos syndrome
How does this affect people day to day?
Awareness!
Who EDS UK are
Meet the team
What do they do?

3. What is Ehlers-Danlos syndrome?
A genetic connective tissue disorder which affects the collagen within the body
Collagen is a protein which is the main building block of the body providing strength and support in ligaments, tendons and cartilage
We are made up of a high percentage of collagen so Ehlers-Danlos syndrome can affect the whole body
A genetic condition is hereditary and is with an individual from birth but symptoms may not show immediately
There are seven different types of EDS with Hypermobility being the most common with the others being: Classical, Vascular, Kyphoscoliotic, Arthrochalasia, Dermatoparaxis and Tenascin X
Ehlers-Danlos Syndrome can be referred to as an invisible illness – individuals often look well from the outside but are experiencing difficulties
For example, without strength in your ligaments, cartilage and tendons in your knee, the joint becomes lax and can sublux and even dislocate. EDS can also affect the internal organs. Some individuals don’t have many symptoms until later in life when they can become unwell in a short period of time. Hypermobility is the most common but the other types can be detected with a genetic test, whereas hypermobility can’t.

4. Different types of Ehlers-Danlos Syndrome
Classical – 1 in 20,000, joint dislocations, velvet skin, hernias, fragile easily split skin and cigarette paper scars
Vascular – 1 in 250,000, fragile blood vessels can lead to major complications, aortic aneurysms are a risk, distinctive features including thin nose and lips and small earlobes, joint hypermobility only in small joints
Kyphoscoliotic – weak muscle tone from childhood, fragile eyeballs, fragile arteries, osteoporosis and curvature of the spine
These are the seven different types of EDS – please read out each list of the differences in the conditions with the following additional comments:
Classical – Around 1 in 20,000 people have Classical EDS which classifies it as a rare condition. Symptoms often include joint hypermobility and dislocations, skin with a velvet texture, hernias and skin which splits easily and heals in a ‘cigarette paper fashion’.
Vascular EDS affects around 1 in people making it very rare, individuals with vascular experience fragility with their blood vessels and are at high risk of aortic aneyrsyms. They often have distinction features including thin lips and nose as well as small earlobes, individuals with Vascular often only have hypermobility in their small joints such as their fingers.
Kyphoscoliotic – Those suffering with Kyphoscoliotic EDS often have weak muscle tone from childhood, fragile eyeballs and arteries and often develop osteoporosis. Individuals have scoliosis and kyphoscoliosis of the spine resulting in a twisted spine.

5. Different types of Ehlers-Danlos Syndrome
Arthrochalasia – Severe joint hypermobility, hip dislocations, atrophic scars, Kyphoscoliotic, skin hyper-extensibility
Dermatoparaxis – severe skin fragility, sagging redundant skin, large hernias and easy bruising
Tenascin X – similar to classical without the scarring, hyper-elastic skin, subluxations and dislocations
Hypermobility – joint hypermobility which can lead to subluxations and dislocations, loose unstable joints, joint pain, fatigue and postural orthostatic tachycardia syndrome
Arthrochalasia – Athrochalasia EDS comes with severe joint hypermobility which can result in hip dislocations, as well as sunken scars and skin hyper-extensibility resulting in extremely stretchy skin.
Dermatoparaxis – This type of EDS comes with severe skin fragility and skin which easily tears, it also causes sagging redundant skin, learn hernias and easy bruising.
Tenascin X – Also comes with joint dislocations but without the cigarette paper scars, individuals often have hyper-elastic skin.
All of the mentioned types of Ehlers-Danlos Syndrome can be diagnosed through genetic testing but Hypermobility cannot.
Hypermobility Ehlers-Danlos Syndrome is the most common type of EDS, it comes with regular joint subluxations and dislocations as well as pain, fatigue and can come with issues surround the bowels and bladder.

6. Hypermobility Ehlers-Danlos syndrome
A high percentage of the population is hypermobile
You can be hypermobile and not have Ehlers-Danlos syndrome
EDS hypermobility syndrome often comes with many difficulties such as:
Dislocations and subluxations
Chronic fatigue
Chronic pain
Gastrointestinal difficulties
Brain fog
Easy bruising
Postural orthostatic tachycardia syndrome – PoTS
It is important to differentiate between individuals being hypermobile, more commonly know as double jointed and those with EDS.
Individuals can be hypermobile and have flexible joints but experience no pain, dislocations, subluxations or fatigue.
Those with EDS suffer from chronic pain and fatigue as well as easy bruising and can have gastrointestinal difficulties.

7. Diagnosis
Unlike the other types of EDS the specific gene has not been identified – so diagnosis follows a different path
You visit a rheumatologist who deal with joints
They will take a look at all factors – how hypermobile you are, joint pain, subluxations and additional issues.
There are two scales which can be referred to – the Brighton criteria and the Beighton score
Once an individual has been diagnosed they can look at how to manage their symptoms with support from their multi-disciplinary medical team
So how do individuals get a diagnosis for Hypermobility EDS
Unfortunately the gene for Hypermobility EDS has not been identified meaning another route is taken to get a diagnosis.
Individuals visit a rheumatologist who will look at their joints, their pain, subluxations and additional issues. They will look at the hypermobility in their joints and refer to the Brighton criteria and Beighton score to diagnose them.
Management of symptoms is needed after this to fully support an individual.

8. Understanding how this affects an individual
Fatigue – understanding the difference between feeling a little tired and being exhausted
In pain – pain in the joints and muscles
Anxiety
Dislocations
Difficulty with mobility
Pacing and exercise are very important!
Swimming, Pilates and cycling are a great way of managing and treating EDS.
But only the right types of exercise! Building up muscle tone can help hold joints in place!
It’s important to pace – this can affect an individuals social life due to being too fatigued to be able to attend social events.
When looking in detail at the difficulties individuals experience day to day, fatigue is a major part, as well as being in pain and suffering from anxiety. Additional to this individuals have to cope with the impact mobility issues have on their day to day life due to subluxations and dislocations.
To manage hypermobility EDS, exercise and pacing are important, taking part in gentle exercise which doesn’t put strain on the joints can help build up muscle strength.
Pacing is very important to avoid the boom and bust cycle of exhausting oneself and being out of action for days or weeks.

9. How does this affect an individual day to day?
Spoon theory!
Please can I have two volunteers?
You have 12 spoons to use for the day but you need to carry out quite a few of the following tasks!!
Getting dressed and showered – 2 spoons
Going to work and having a meeting– 3 spoons
Having lunch and afternoon work– 3 spoons
Going swimming – 3 spoons
Dinner and dusting – 3 spoons
Dinner out and cinema with friends/date night – 4 spoons
The simplest way to explain how this affects someone day to day would be the spoon theory.
You have 12 spoons which represent your energy for the day, once you have run out of spoons you cannot do anything else for the day.
Please can I have two volunteers, between you please decide which activities you would like to do on one day.
It can be hard to prioritise, to have time to be social and to not exhaust yourself. Once the spoons are gone this represents your energy levels and the impact it can have on someone’s life.

10. Who is The Ehlers-Danlos Support UK?
The only EDS charity in the UK
Covers England, Wales, Scotland and NI
A board of trustees
Medical Panel
Small staff team
Volunteer Area Coordinators
Set up in 1987
Who are The Ehlers-Danlos Support UK? They were set up in 1987 by Valarie and Tom Burrows, Lara Bloom joined around 5 years ago and was set up in a small church hall and the charity was grown to what it is today quickly. EDS UK is the only EDS charity in the UK and covers England, Wales, Scotland and NI. They have a board of volunteer trustees who help make decisions for the charity. There is also a medical panel made up of geneticists, rheumatologists and other medical professionals who help make decisions about management and diagnosis. There is a small staff team who run the office, managing fundraising, volunteers, memberships and running a helpline. There is also a great support network of volunteer Area Coordinators who offer support and run groups in their local areas.

11. Guy – office manager: manages budgets, IT and oversees general decisions
Meet the team!!
Area Coordinators – running support groups: working hard to set up support groups and support their local community
Sarah – communities manager: manages volunteers across the UK and the EDS community
Cathy – membership and donations administrator: managing new memberships and donations
Mya – helpline advisor: offers advice and support for those with EDS or seeking diagnosis
Michelle – fundraising coordinator: supports and arranges fundraising activities across the UK
Erin – social media: manages social media accounts and posts relevant information
EDS UK have a small team who work in Borehamwood, there’s Guy the office manager, Sarah the communities manager, Erin who manages social media, Michelle the fundraising coordinator, Mya the helpline advisor and Cathy the membership and donations administrator. There is an excellent team of volunteer Area Coordinators who offer support and meetings for those in the EDS community in their areas across the UK. The team help keep the charity running and work on new projects throughout the year.

12. What do EDS UK 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 – Area Coordinators run support groups in their area
Fundraising – assisting individuals with fundraising in their local area
Awareness – spreading awareness of EDS through different outlets
1. These are available online for members who are unable to attend the conferences. 2. The helpline advisor as well as the rest of the team work hard to offer support for those with or being diagnosed with EDS and what steps they can take next. 3. Facebook and twitter are a huge aspect of the charity, with over 50 active Facebook groups, offering support and management advice. 4. Support groups are run by the volunteer Area Coordinators across the UK, they cover certain topics every quarter and share the latest information on management with their local members as well as providing much needed support. 5. Fundraising assistance is given for local areas with leaflets, posters and advice given out as well as larger projects such as the London Marathon. 6. Awareness is especially important as EDS hypermobility moves out of the rare disease category, the more awareness spread the more support and management available to the community.

13. How can I help?
EDS hypermobility was initially classified as a rare disease but this is now changing. Please help us spread awareness.
Awareness – word of mouth, posters, leaflets and fundraising!
Fundraising helps us to promote EDS and provide quality support to those who suffer with Ehlers-Danlos syndrome. It helps us work with medical professionals from all over the world to innovate and work together to find effective management techniques.
What can you do?
With EDS hypermobility moving away from being classified as rare, raising awareness and spreading the word is extremely important.
Talking to others, putting up posters and handing out leaflets all help to let others know. Additional to this fundraising is vital to The Ehlers-Danlos Support UK being able to support members and their families with EDS as well as producing and promoting awareness.

14. Questions?
If anybody has any questions you are unable to answer please ask them to call or EDS UK on: Or