Ehlers-Danlos Syndrome Awareness Month
Educate yourself and others on Ehlers-Danlos Syndrome, a hard-to-diagnose condition that may cause chronic pain, fragile skin, joint problems and more.
Position your healthcare, diagnostic, or patient-support brand as a trusted resource for rare disease education and early detection during EDS Awareness Month.
- 'Know the Signs: 5 EDS Symptoms Often Missed by Doctors' — educational content targeting misdiagnosed patients
- Partner with patient advocacy groups to amplify stories of undiagnosed EDS sufferers and drive awareness
- Promote genetic testing services, diagnostic tools, or pain-management solutions tailored to connective tissue disorders
- Host a webinar or Q&A with rheumatologists/geneticists to educate healthcare professionals on EDS classification updates
Before 1997, researchers classified Ehlers-Danlos Syndrome into ten specific types, based on specific genetic mutations associated with symptoms (such as connective tissue issues). As genetic testing improved, however, the number of Ehlers-Danlos-type syndromes began to expand, with more than thirteen currently classified.
The rationale for Ehlers-Danlos Syndrome Awareness Month, however, isn’t as straightforward as calling for more accurate DNA tests. Many researchers believe that medical science is only just scratching the surface of syndromes related to the original set. Genetic testing, therefore, may not detect all instances of the disease. Some mutations may be so rare that there are just a handful of people affected by them throughout the world. In some cases, a person presenting with Ehlers-Danlos-like symptoms may be the only example.
There is a need, therefore, to pay close attention to the clinical manifestations of the condition, not just testing. Individual patients may present with all the hallmarks of the syndrome, but DNA procedures for the most common varieties of Ehlers-Danlos may not provide confirmation.
The Ehlers-Danlos Society ran the first Ehlers-Danlos awareness month in 2006. Since then, the organization has worked tirelessly to improve the public consciousness of the condition by supporting people around the world with the syndrome. In 2017, the society attempted some branding and social media outreach under the “Dazzle Together” hashtag.
The story behind the name for the campaign is interesting. Traditionally, medics called patients presenting with Ehlers-Danlos syndromes “zebras,” a reference to the medical school mantra “when the hoofbeats, think horses, not zebras.” The original saying inculcated trainee doctors in the idea that they should proceed with the most obvious diagnosis first – the horse – and only investigate less clear-cut symptoms afterwards – the zebra.
The problem for Ehlers-Danlos patients is that they are zebras – they have a rare disease. So applying the standard medical school wisdom doesn’t help them. In fact, it is counterproductive.
The “dazzle” part of the hashtag comes from the traditional way of referring to a group of zebras as a dazzle. Thus, the “Dazzle Together” campaign was born. And now, the community works together to improve awareness of the condition, raise funds for research, and reach out to the public over social media.
There are a lot of different people involved in Ehlers-Danlos Syndrome Month. Patients, health professionals, charities, donors, and caregivers all work to get the critical message discussed here out to the public. The Ehlers-Danlos Society provides brochures, posters, digital presentations, and instructions for members for how to best make use of their time.