The event dates back to 2006 when it was founded by the Ehlers-Danlos Society.
May marks the beginning of Ehlers-Danlos Syndrome (EDS) Awareness Month and this year’s theme is ‘Together We Dazzle’. The event was founded by The Ehlers-Danlos Society in 2006 in the USA, however support has quickly spread across the globe.
What is EDS?
Unbeknownst to many, there are 13 different types of EDS which majorly affect connective tissue – a vital part of the human anatomy that supports skin, ligaments, internal organs and blood vessels. The most common form of the disease is called Hypermobile EDS, and it is estimated to affect around one in 5,000 people.
Other types of EDS, which are classed as ‘rare’, include classical, vascular and kyphoscoliotic – a type that can cause weak muscle tone from childhood which can seriously hinder sitting and walking progress if symptoms worsen.
Against this backdrop, according to the NHS symptoms of EDS can vary depending on the extremity of the condition. Some of them include joint pain, excessive fatigue, digestive problems, bladder incontinence and even heart failure.
It is believed that the disease is largely hereditary and can be passed on from either one or both parents that possess a faulty gene. For example, vascular EDS is caused by a mutation in a gene otherwise known as COL3A1. However, in some circumstances the disease can also develop in individuals without a family history of the condition.
Meanwhile, the causes of EDS may have been discovered but severe underdiagnosis rates and varying subtypes have led to knowledge gaps in treatment plans. Currently there is no cure for the condition, just treatment options to help manage symptoms – even then consultants note that plans are often distributed on a trial-and-error basis.
Questionably, no test has been created to confirm whether someone has EDS. As it stands, medical experts examine a person’s medical history and perform a physical examination based on symptoms.
The need for EDS Awareness Month
With this in mind, it goes without saying that the EDS field requires endless amounts of more research and support, which is exactly what The Ehlers-Danlos Society are working tirelessly to achieve.
This year campaigners have launched a series of world-wide initiatives with a goal of raising $100,000 to fund research projects and education programmes for healthcare professionals. One scheme is inviting individuals to get moving in any way they deem fit. People can walk, wheel, roll or cycle 100 steps, 10 miles or 100 miles this month.
Against this backdrop, people who struggle with mobility but still want to participant in spreading awareness are being encouraged to share as much about the event as possible on social media. The campaign group have created a list of 31 different themes that people can share every day with the hashtags #MyEDSChallenge and #MyHSDChallenge. The themes can be found in full here.
Arguably one of the most impressive programmes will see buildings across the world turn red. The campaign group are advocating for people to contact the individuals/organisations who look after their local buildings of interest – shopping malls, town halls, schools, monuments and statues – and ask them to turn it red for #REDS4VEDS Day on 16th May 2025. The meaning behind the colour red is to support awareness of vascular EDS – a life-threatening form of the disease that can cause blood vessels to rupture and internal bleeding.
However, should anyone miss the date, the campaign group have likewise said that buildings can also be asked to turn orange any day throughout May to show their overall support for the awareness month.
‘This year, our goal is to raise $100,000 in May – funding groundbreaking research, education for healthcare professionals, and critical support for those impacted worldwide,’ a statement from the Ehlers-Danlos Society read. ‘Let’s make an impact together. Whether you walk, roll, share your story, or fundraise, every act of awareness fuels change.’
More information about the awareness month can be found in full here.
Photo by Behnam Norouzi via UnSplash
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