Transcript presentation-secondary school - Ehlers

The Ehlers-Danlos Support UK
What will we be covering?
• What is Ehlers-Danlos syndrome
• How does it affect people day to day?
• Who are EDS UK
• Meet the team
• What do they do?
• Awareness!!
So 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
lots of issues on the inside
A quick lesson in genetics!
 Genes are what makes us US!
 We inherit one pair from our mother and one from our father
 They are unique instructions which make up each individual and affect everything from the
way we clasp our hands to way our ear lobes look!
 Some genes are dominant and others recessive
 Brown eyes for instance can be a dominant gene in a family! How many of you have brown
eyes?
 Did you know that even rolling your tongue is a genetic trait – and if you’re the only one in
your family who can do this the genetic alteration has started with you!
 Hypermobility is a dominant gene and a heritable condition but you can be the first in your
family to have it
Hypermobility Ehlers-Danlos syndrome
A high percentage of the population is hypermobile – double jointed!
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!
Why the zebra?
 Who here would like to work in the medical
profession?
 Imagine a medical condition is presented by a hoof
beat
 What do we think of when we hear a hoof beat?
 Horses! – this represents the more common
conditions people will suffer from
 But zebras make hoof beats too! These represent
the rarer conditions
 It teaches individuals to look out for the zebras as
well as the horses!
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
 Getting to school and first two lessons – 3 spoons
 Having lunch and afternoon lessons – 3 spoons
 Going swimming – 3 spoons
 Dinner and homework – 3 spoons
 Dinner and seeing friends for a cinema trip – 4 spoons
Diagnosis

Unlike the other types of EDS the specific gene has not been identified – so
how do we know someone has EDS?

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
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
 Might be unable to do PE
 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 – understanding that someone with EDS might be too
tired to attend an event this week, are they saving their energy for the
school social next week? Don’t stop inviting your friend to things – I can
assure you they still want to attend!!
Who are The Ehlers-Danlos Support UK?
The only
EDS charity
in the UK
Covers
England,
Wales,
Scotland
and NI
Set up in
1987
The
EhlersDanlos
Support UK
Volunteer
Area
Coordinators
Small staff
team
A board of
trustees
Medical
Panel
Area Coordinators –
running support
groups: working hard
to set up support
groups and support
their local
community
Meet the team!!
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
Guy – office
manager: manages
budgets, IT and
oversees general
decisions
Michelle –
fundraising
coordinator: supports
and arranges
fundraising activities
across the UK
Erin – social media:
manages social media
accounts and posts
relevant information
What do they 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
How can I help?

EDS hypermobility was initially classified as a rare disease but this is
beginning to change as the medical profession become more aware – so let’s
push it further!

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.

It allows the next generation – you! – to make a difference!
Questions?
Fun Fact
Dog’s can get
EDS too!!
A main
symptom for
them is
extremely
stretchy skin!