DRAYTON proudly supports EDS UK
What is EDS?
- Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue condition that is a multi-systemic syndrome.
- Connective tissue covers over 95% of your body so there is little that escapes the symptoms.
- EDS can be inherited or due to a spontaneous mutation that causes a defect in the synthesis of collagen (a protein in connective tissue).
- Collagen is found throughout the entire body and is what gives the body its strong structure, acting like glue and holding it all together.
- These mutations cause fragility throughout the whole body: skin, muscles, ligaments, blood vessels and visceral organs..
- The development of spontaneous aneurysms, dissections and ruptures can occur at any time leading to death, disabilities, debilitating conditions and acute/chronic pain.
- There is no cure; there are no effective treatments, only supportive, preventive care and monitoring.
What does EDS UK do?
Our vision is that nobody should be left to fight on their own. Every person with EDS should have access to the appropriate medical services and care.
We work to improve the quality of life for people living with EDS, raising awareness and providing support as part of a growing community.
We have four areas of focus guiding all of our work:
- Education and awareness
- Support for those affected by EDS
- Better knowledge through research
- Organisational capability – making sure we are a high performing, sustainable organisation
Why the Zebra?
"When you hear the sound of hooves, think horses, not zebras."
- This phrase is taught to medical students throughout their training.
- In medicine, the term "zebra" is used in reference to a rare disease or condition.
- Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses.
- Doctors learn to expect common conditions.
- But many medical professionals seem to forget that "zebras" DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions.
- Ehlers-Danlos syndrome is considered a rare condition and so EDS sufferers are known as medical zebras.
- This identity has now been adopted across the world through social media to help bring our community together.
The Sad Reality
EDS is often undiagnosed and/or misdiagnosed and it’s estimated that 90% of those affected never receive a proper diagnoses or treatment within their lifetime.
Many young children/adults have lost their lives prematurely because of this lack of understanding. If an EDS patient is fortunate enough to get a diagnosis, it usually takes 20+ years for that to even happen.
How does DRAYTON support EDS UK?
Upcoming Events: Southampton Fun Run
How can I get involved?
Donate: either by texting EDSX70 £1/£2/£3/£4/£5/£10 to 70070 or visit our fundraising page: www.justgiving.com/companyteams/Drayton
Spread the word: being a rare illness, EDS isn’t particularly well known. Spreading the word and informing others helps more than you know.
I want to do more: if you’d like to get more involved than the options mentioned so far, visit www.ehlers-danlos.org/get-involved/ or call EDS UK on 0208 736 5604.
Donations go to EDS UK - the only UK based charity that exclusively represents and supports people with any of the types of EDS. The money will fund research into the faulty gene that causes EDS and will also help to find a cure.
By donating, you can help make this ‘invisible illness’ visible and aid in finding a cure for this incurable syndrome.