Throughout May, people from all over the world have been showing their support for individuals who have one of the 13 types of Ehlers-Danlos syndrome (EDS) or a Hypermobility Spectrum Disorder (HSD).
Spearheaded by The Ehlers-Danlos Society, EDS Awareness Month has taken place every May since the first event back in 2006. The Ehlers-Danlos Society can trace its roots back to 1985, when it was established in the USA by Nancy Hanna Rogowski as the Ehlers-Danlos National Foundation (EDNF). Nancy created the EDNF in a bid to bring together people with EDS to emotionally support one another; from this humble beginning, the EDNF grew to become a 'vital information link'. The foundation has since contributed to the advancement of research into EDS and public advocacy on a global scale. In May of 2016, the Ehlers-Danlos society emerged from the former EDNF as 'the very first truly international organisation devoted entirely to global research and the support and advocacy for patients, caregivers, and medical professionals.' The society describes EDS Awareness Month as 'a time we all come together, celebrate our vibrant global community, share experiences, and highlight what is needed to progress change'. Many different fundraising events have been taking place, including the popular Walk & Roll Challenge. Those who take part are asked to walk, run, wheel, cycle or even use a treadmill for a set distance, whether it's 25 steps, 25 miles or 250 miles! The aim is to collectively reach a total distance of 25,000 miles, which is the approximate circumference of the Earth.
#EnoughisEnough
This EDS Awareness Month, Ehlers-Danlos Support UK launched its new #EnoughIsEnough campaign. The campaign seeks to highlight the fact that both the diagnosis and management of people in the UK with EDS or HSD 'has been neglected, causing anxiety, distress and unnecessary pain.' In an attempt to redress these issues, Ehlers-Danlos Support UK will be lobbying the government through community engagement, including petitions, to provide extra funding to the NHS.
As yet, there is no cure for EDS and so treatment focuses on managing the symptoms. One of the ways in which this can be achieved is by wearing dynamic Lycra® compression garments such as those from the Medigarments Ltd Sensory Dynamic Orthosis (SDO® Original) collection. The garments can help in numerous ways from increasing the stability of joints and enhancing posture to reducing pain and improving day-to-day functioning.
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