What is Ehlers-Danlos Syndrome (EDS)
With May being Ehlers-Danlos Syndrome awareness month, there is no better activism topic for me to talk about this week. Ehlers-Danlos syndrome (EDS) is a genetic progressive disease that weakens your body's connective tissues. These are things like tendons and ligaments that hold parts of your body together. EDS can make your joints loose and your skin thin and easily bruised. It also can weaken blood vessels and organs. Ehlers-Danlos Syndrome causes chronic pain, fatigue and depression among many other disabling issues. My mother can attest to the difficulty of living with EDS. It gives her immense chronic pain and joint instability daily, taking most of her mobility away.
Digital Marketing & EDS
One of the biggest advocates for EDS is The Ehlers-Danlos Society. They are dedicated to advancing research and education for EDS as well as supporting the development of effective EDS therapies and working to improve the lives of individuals affected by EDS like my mother.
One of their main goals is to provide education on Ehlers-Danlos. They do this through content on their site, providing articles about all the different types of EDS (there are eighteen). They also ask people living with EDS to share their stories, creating even more content and awareness for the syndrome. On top of their main articles giving the core information about EDS, they also have The Ehlers-Danlos Society News page where they share more stories and articles that relate to people living with EDS, providing additional content for those who are deeper in the funnel and still want more information.
They have a bi-weekly newsletter that anyone can sign up for to get information and updates about EDS.
As seen in the image above, they are also creating awareness through social media, posting content and spreading awareness pretty frequently on Instagram, Twitter and Facebook. They ask those with Ehlers-Danlos to post their experiences on their personal social media. This reached my mom and she took the step to post on her page and share her experiences with her friends and family that didn't know her daily struggles. This resulted in many conversations with several people educating them even more.
Finally, the biggest thing that I think the community of EDS is doing well is their brand. They have symbolism for the syndrome and recognizable things that are covert but recognizable if you know what they are. The EDS community has embraced Zebras as a symbol. The reason they did this is because when you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos Syndrome are identical. The other reason for the zebra representation is when doctors hear hoofbeats they think horse, not zebra. It is common for someone with EDS to be misdiagnosed, or each symptom treated individually for many, many years rather than doctors putting the pieces, or stripes, together giving the diagnosis of EDS and treating the disease correctly. With the zebra representation people are able to wear zebra stripes in their day to day life and identify each other without standing out. Once, when I went to a conference with my mother, another attendee recognized that she had a zebra striped cane and they started chatting about EDS. They ended up exchanging contact info and provide support for each other. They would have never connected if it wasn't for the zebra stripes.
How Can The Ehlers-Danlos Society Do More
I think for how rare of a syndrome Ehlers-Danlos is the awareness it has is pretty good, but it definitely could be better. I understand that it is a non-profit so putting money into advertising is a hard thing to do. However, with even more awareness I think it would increase the amount donated over time, therefore expanding research and the education it provides. The biggest thing I would recommend for them to do is fix their website. It is not terrible, but at points it was a little buggy, especially when it was in a smaller menu. With that I would recommend trying to do A/B testing on their site to see what performs the best. Educating people on important topics is hard and getting them to take action once they are educated is even harder. If a site is buggy people may leave it. A/B testing would allow fine-tuning adjustments that I think the site needs. With the site at its peak potential it can lead to higher conversion rates with more awareness and donations coming in.
Bottom Line
To wrap up this blog and create some more awareness I want to share some interesting information that my mother shared for May's awareness month:
Did you know a group of zebras is called a dazzle?
Living with an Ehlers-Danlos Syndrome is not always easy. We take comfort and pride in the strength and support of our community, and what we can achieve together. Together, we dazzle!
.png)