Recently, the Ehlers-Danlos Society held its second annual Zebra Ball at the EDS World Learning Conference in Baltimore, Maryland. The event fundraised for further support and awareness of Ehlers-Danlos syndrome (EDS), and gave participating families, patients, and supporters a chance to dress up and celebrate the EDS community.
“It’s Our Time”
Jazz musician Noah Baerman— who has helped with fundraising and awareness efforts after his own EDS diagnosis nearly led him to leave music years ago— performed throughout the night. Additionally, there was a surprise musical performance of “It’s Our Time,” an anthem of the EDS community, which was written about the long odyssey people face while searching for a diagnosis. The song was performed by Christina Bloom, who is married to Ehlers-Danlos Society Internatonal Executive Director Lara Bloom, and Sandy Aiken Chack, chair of Ehlers-Danlos Society. To hear the song on the Ehlers-Danlos Society website, click here.
As International Executive Director Lara Bloom described the event, “Zebra Ball is an opportunity to bring everyone together after a jam-packed few days of listening and taking in information to relax, come together, and listen to music.”
What is Ehlers-Danlos Syndrome?
For those unfamiliar with Ehlers-Danlos syndrome, the term refers to a group of genetic disorders affecting connective tissue. While the most well-known symptoms of EDS are hypermobile joints and stretchy skin, a wide range of symptoms can appear throughout different organ systems.
People with EDS face symptoms including fatigue, chronic pain, and many different co-morbidities. Some people will develop potentially fatal vascular complications, while others face severe changes to their quality-of-life. However, there is a pervasive lack of awareness about EDS throughout both the general population and the medical community. Many people endure years or lifetimes of pain without answers, adequate treatment, or even acknowledgement. While EDS has previously been categorized as “rare,” those more familiar with the syndrome clarify that it could be more accurately described as “rarely diagnosed.” To learn more about EDS, click here.
What are “Zebras”?
Zebras are commonly used as a symbol of people with EDS and other rare or underdiagnosed conditions. This roots back to the phrase medical students are taught while training: “When you hear the sound of hooves, think horses, not zebras.” The general idea is that, when doctors hear symptoms, they should look for the simple, common explanation, rather than the rarer or less-frequently-diagnosed cause. However, while horses are more common, zebras still exist—and yet are often forgotten by the medical community. A group of zebras is called a “dazzle”, and this term is also used by people with EDS to describe the vibrancy and strength of the EDS community coming together.
The Ehlers-Danlos Society connects patients, care partners, and medical professionals to support research, awareness, advocacy, and community. In recent years, the organization has helped consolidate knowledge and support, and boosted EDS’s presence into the public eye. Last week, the Ehlers-Danlos Society held a learning conference, which brought patients together with some of the most highly-esteemed doctors in the field, to help support people struggling with symptoms and spread up-to-date treatment and research news.
Over the next week, Patient Worthy will be sharing new information we learned at this conference and updating older EDS articles with more current knowledge. While the updates shared at the conference are invaluable to understanding and treating EDS, the social component and celebration provided something of equal importance.
Although symptoms vary from one patient to the next, almost anybody with EDS will tell you that their chronic illness has kept them from participating in the things that they love. It can interfere with work, art, and put strain on relationships and social engagements. Fatigue, mast cell activation syndrome, pain, and lack of understanding can make large events hard to attend. The Zebra Ball was designed with these issues in mind, and gave people with EDS a place to relax, to connect with people who understand their journey, and to enjoy that while EDS has brought each person there some form of pain, it has also brought together a community full of creativity, music, laughter, and support.
Special thanks to Zach Thornton for help with this article.