EDS & HSD Awareness Month 2024

Times Square, in New York City, USA, is one of the world's most visited tourist attractions. Approximately 330,000 people pass through Times Square daily, and we are delighted to have raised awareness of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) there from May 4-10 during EDS and HSD Awareness Month.

The Ehlers-Danlos Society showed a 15-second awareness video on the huge Nasdaq billboard, the seven-story-tall Nasdaq tower with 10,000 square feet of signage. The video was shown four times per hour across seven days.

This is incredible for awareness and we had the opportunity to reach so many new people and make them aware of EDS and HSD.

On May 4 we welcomed members of the community to join to see its launch. Here, we speak to some of those who attended and asked them why it was so important to them. Together, we dazzle!

[angelwingscratcher]

Thank you so much for sharing this and spreading awareness about EDS. 💕💕

[debpaskall]

Diagnosed at 50. My kids all have it as well. Thank you so much.

[chaemoorman]

I'm so glad to see this. Awareness is needed

[shannongreenwell]

Thank you for sharing this with all of us, I have cEDS and my niece has hEDS. We both got it from our parents, our mom’s have Osteogenesis but our fathers must have been the one that carried the genetic mutation for EDS.

[jett]

hEDS here, along with my daughter! As each year goes by, various folk in medical fields seem more aware of EDS.🦓🦓🦓 p.s. I'd LOVE to have some of the EDS themed shirts/hoodies(2:36) shown in this video!

[Fallerina]

It's already hard to get a clinic diagnosis for hEDS (in Germany), but it seems almost impossible to get therapeutic help or find specialists here to help manage the symptoms. Doctors seem to collect money as long as some testing can be done, but as there's no surgical solution or any money involved in the therapy of EDS, in my experience you are just on your own... I hope that current research and higher visibility of this complex topic will improve the situation... Love to all of you zebras and horses out there!

[amychidley]

Sending so much love to all my fellow Zebras.

[gppoem]

I’m 51 and I’m pretty sure I have this. I wish the wait lists to get tested weren’t so long. No one really believes me feeling sick all the time. I want people to believe me!

[waterrat]

"Nobody should wait 30 years for a diagnosis " Amen.
Shame on our medical society. Shame on you for calling us pain-seekers. Shame on you for blaming fibromyalgia. Shame on you for making genetic testing $$$$

[exiledxcrafter]

How do you talk to a doctor about actual diagnosis when she said there's no tests for it but gave me a script for pt that says possibility of eds. Now Im researching and finding there's only one type they can't test for so maybe it's more important than she thinks?

[gillders]

Finally diagnosed with hEDS last week, 30yrs after onset of symptoms. I’ll be 50 next month. No help from Doctors whatsoever. Had to pay privately for a diagnosis in the end. The awareness just isn’t there sadly

[wild.forestflower]

How is this improving awareness and education when the video explains absolutely nothing about what it is..