Making the invisible visible

Making the Invisible Visible

by Shanna Mitchell

MAY IS EHLERS-DANLOS SYNDROMES AWARENESS MONTH

This year as part of EDS awareness month we (The EDS UK) are hosting an EDS fun day in the Children’s Wood Glasgow. The aim of this event is to:

• Raise awareness of Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders (HSD).
• There will be an awareness information stall and lots of fun activities for all.
• The fun day will take place at The Children’s Wood, North Kelvinside Meadow, an accessible outdoor space.
• The event starts at 12noon and ends at 4pm.
• The event will be attended by people with EDS & HSD, their family, friends, carers and is open to members of the public.
• The event is being sponsored by the Forestry Commission Scotland and is supported by Ehlers-Danlos UK, the Children’s Wood and Operation Play Outdoors.It is our hope that this event will benefit both people affected by EDS & HSD, as well as members of the public who may be unaware of EDS & HSD and need additional information.Individuals who are disabled/chronically unwell often struggle to access natural, outdoor spaces. We hope that this event will give people with EDS & HSD the opportunity to visit and enjoy an accessible outdoor space.Many studies have researched the health benefits of being in nature and have found that it has positive health benefits on mental health, focus and short term memory. EDS & HSD are multi-systemic conditions which can be taxing on an individual’s physical and mental health. We are hoping that a day spent relaxing, exploring and having fun in The Children’s Wood will have a positive impact on all who come along.

EDS family fun day

We want to unite our zebra community from across Scotland and step out of the shadow of social media to raise awareness in public with the wider community. We want people to get a better sense of what EDS & HSD are, what it means to live with them and to better understand them and the complex comorbid conditions in order to “Make Our Invisible Visible”.

There will be lots of fun activities for all the family – come along to try some arts and crafts, take part in some campfire activities, listen to some storytelling, build your own den or even get your face painted! You’re also welcome to simply come along to relax and enjoy the lovely environment of the Children’s Wood – bring your own beanbags or cushions to relax in style! There will be plenty of opportunities to chat with others, share experiences and learn more about EDS & HSD as well.

What is Ehlers Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD)?

Ehlers Danlos Syndromes (EDS) are a group of heritable connective tissue disorders that alter collagen in the body. Collagen is the most abundant protein in the body, and essentially acts as the glue which holds the body together. This therefore means that people with EDS can experience a range of complex and multi-systemic problem such as joint hypermobility which results in dislocations and subluxations, chronic pain, fatigue, gastrointestinal issues, heart problems, internal organ ruptures, brain fog, cervical instability, unitary dysfunction and other symptoms.

There are 13 main types of EDS, these are rare conditions, however the most common type, Hypermobile EDS (hEDS), is often misdiagnosed and under- diagnosed and is unique as the cause is completely unknown unlike the other types.

Hypermobility Spectrum Disorders (HSD) are a group of conditions related to joint hypermobility (JH) and just like Hypermobile EDS (hEDS) people with HSD can have multi-systematic problems. There is no cure for EDS and HSD, but early diagnosis is key as it can save lives, provide management, care and tools to live.

Awareness is very important, but even more important than this is “Action”. People with EDS & HSD deserve to have access to appropriate medical care and support in Scotland.

It is my hope that this article will raise awareness and help educate the public about Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) and to bring hope to the EDS & HSD community across Scotland.

Please come along, enjoy and support us at our fun day on the 20th of May (from 12 – 4pm). It’ll be great fun for all the family!
The Ehlers-Danlos Support UK is the only UK based charity that exclusively represents and supports people with all types of Ehlers-Danlos Syndromes
(EDS). The EDS UK is a charity registered in Scotland (SC046712) and in England and Wales (1157027). There are four regional groups in Scotland (Glasgow, Edinburgh, Aberdeen and Inverness), lead by volunteers who are affected by EDS and HSD. Most groups have support group meetings on a regular basis and we have been doing this since 2014.

EDS & HSD Awareness Scotland is an action group run by a group of volunteers who are affected by EDS & HSD.The group was

established in early 2017 to raise

awareness of EDS/HSD and to lobby for greater care and support for those with EDS/HSD in