- Categories:
- Health
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- AwarenessEducational
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- International
- Date change rule:
- Every May
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- 🦓
EDS Awareness Month unfolds throughout May, dedicated to illuminating Ehlers-Danlos Syndromes (EDS), a group of hereditary connective tissue disorders. Join us in learning about the diverse symptoms, supporting those affected, and advocating for better understanding and research. Share your story, educate others, and connect with patient communities.
Want to sponsor EDS Awareness Month? Learn how
Expected EDS Awareness Month Deals
Throughout EDS Awareness Month in May, the focus shifts from commercial deals to vital fundraising and awareness campaigns. Organizations like The Ehlers-Danlos Society spearhead initiatives, often partnering with corporate sponsors for donation matching programs or special product lines that contribute to research and patient support. Look for opportunities to participate in virtual walks, educational webinars, and social media challenges designed to spread knowledge about EDS and Hypermobility Spectrum Disorder (HSD). Many medical supply companies and physical therapy clinics may offer educational resources or special consultations. We encourage everyone to visit the official websites of leading EDS advocacy groups to find direct ways to donate, volunteer, or engage with their campaigns throughout the month.
Platform Guide for EDS Awareness Month
Tag @nationaltoday_ and use #EDSAwarenessMonth. Share personal stories, educational infographics, and highlight the zebra stripe symbol.
X/Twitter
Mention @NatlToday and use #EDSAwarenessMonth. Share research updates, advocacy news, and connect with medical professionals and patient groups.
Mention National Today (facebook.com/nationaltoday) and use #EDSAwarenessMonth. Join community groups, share support resources, and organize local virtual events.
EDS Awareness Month Hero
Henri-Alexandre Danlos
History of EDS Awareness Month
Although Ehlers-Danlos syndrome was identified back in the early 20th century, its classifications were not known until recently. Until 1997, medical researchers could figure out 10 specific types based on genetic mutations of tissues. With the progress in genetic testing, however, they have now detected over 13 classifications. The list might keep expanding as the research is ongoing.
Many researchers believe that medical science has yet to detect all the instances of the disorder. At present, they are only just scratching the surface of the initial syndrome. And that’s the very problem with E.D.S. While it’s not a rare disease, it cannot be easily diagnosed.
This brings us to the purpose of E.D.S. Awareness Month. It was first started by the Ehlers-Danlos Society, a non-profit organization, in 2006. They have since been working tirelessly to improve public consciousness of the condition around the globe. They provide support to patients and also conduct in-depth research as much to get to the root of the disease as to keep abreast of the developments.
In 2017, the society was to start a social media outreach program with #DazzleTogether, which eventually gave birth to the “Dazzle Together” campaign. The idea comes from the collective noun ‘dazzle’ used to refer to a group of zebras. This again goes back to the old medical school motto — when you hear hoofbeats, think of horses and not zebras. We think that’s amusing!
Keeping this in mind, we should do our bit to be there for the dazzlers. There are various ways to show support from donating money or distributing brochures on behalf of the Ehlers-Danlos Society.
EDS Awareness Month timeline
Edvard Ehlers recognizes the condition as a distinct entity.
French dermatologist Henri-Alexandre Danlos suggests skin elasticity and fragility as the cardinal features of the syndrome.
The genotypes for E.D.S. are identified, and mutations in many genes cause the disorder.
Peter Beighton publishes the classification of E.D.S. as per the Villefranche nosology.
How Businesses Can Celebrate EDS Awareness Month
Local businesses can honor EDS Awareness Month by hosting educational workshops or webinars on connective tissue health, inviting medical professionals to speak. Physical therapy clinics can offer free consultations or discounted services for EDS patients. Retailers might partner with EDS advocacy groups for a ’round-up at checkout’ campaign, donating proceeds to research or patient support. Even restaurants can participate by offering a special ‘zebra stripe’ themed menu item with a portion of sales going to a relevant charity, raising both funds and visibility for the cause.
EDS Awareness Month FAQs
When is EDS Awareness Month?
In 2027, EDS Awareness Month will again be observed for the entire month of May, from Saturday, May 1, to Monday, May 31. It’s an important time to amplify the voices of those living with Ehlers-Danlos syndromes.
How many people are affected by Ehlers-Danlos Syndrome?
While exact figures can be challenging due to underdiagnosis, it’s estimated that millions worldwide live with EDS or Hypermobility Spectrum Disorder. Awareness campaigns aim to improve diagnostic rates and ensure more individuals receive appropriate care.
How is EDS Awareness Month observed?
Observances in 2027 will likely include social media challenges, webinars with medical experts, and advocacy efforts to promote research and better healthcare access. Many wear zebra stripes, the unofficial symbol for rare diseases, to show support.
What are the different types of Ehlers-Danlos Syndrome?
While all types involve connective tissue abnormalities, their severity and primary symptoms vary widely. Diagnosis often involves clinical criteria and genetic testing, with ongoing research continuing to refine classification and understanding of these complex conditions.
How to Observe EDS Awareness Month
Join a community event
If you want to help, you may consider getting involved with any local community that’s raising awareness about Ehlers-Danlos syndrome. Be a part of the activities to show your support for the cause and reach out to people in need.
Organize a session
This is also a good time to take the lead and host a session on E.D.S. awareness in your neighborhood, at your kid’s school, or a local club. The good thing about awareness months is that you can have week-long sessions.
Go the extra mile
Make a difference by doing your bit. Join rallies, donate to or take part in fundraisers, volunteer as a caregiver for a day, and so on.
5 Facts You Didn’t Know About E.D.S.
Stretching helps
Just because someone is hypermobile doesn’t mean they shouldn’t stretch.
Rarely diagnosed
Most of us might not be aware of this condition, but it is quite common in many individuals — it is the lack of knowledge and diagnosis that makes us think E.D.S. is a rare condition.
Can affect mental health
Physical impairments or discomforts can often disturb patients, leading to mental health problems — the least we can do is to be kind to the ones suffering.
Slow healing
E.D.S. cannot be cured in a jiffy — this might sound disheartening, but the good part is that it heals over time with necessary care and effort.
Easily bruised
People with E.D.S. tend to have fragile skin because of the low production of collagen and hence get bruised easily.
Why EDS Awareness Month is Important
It shows support to the ones suffering
This month is celebrated not only to raise awareness about E.D.S. but also to show support to people who live with or are diagnosed with the condition. This awareness month can help us bring attention to other conditions.
It breaks the stigma
Many people carry the stigma of bearing a physical disability or condition. Let’s break this cycle and be a little kinder to them by lending a helping hand.
Spreading the word
EDS Awareness Month is an effort to help people understand the impacts of E.D.S. on a person, be it a caregiver or a patient. Being a difficult-to-diagnose condition, E.D.S. can be quite a bummer to many. This month allows us to know about this condition so we can treat it better.
Social Media Tips for EDS Awareness Month
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