20 free reasons
plus two more at no extra charge!

May is designated as Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month. Throughout the month, there are fun ways to show your stripes and help raise awareness of these often-overlooked conditions. Check out some of the ways below that you can help strengthen connections and brighten the future. Note: EDS diagnosis not required!

• Share your story! Whether with a friend, on social media, or in another way, share your story of diagnosis, of a medical procedure you went through, or of what life is like with EDS or HSD. By sharing our stories, we know we’re not alone.
• Check out a support group or start one of your own!
• Dress in zebra stripes or black and white. Show off any cool EDS/HSD gear you have. Don’t have any EDS, HSD, or zebra-themed items? Check out places like RedBubble, Threadless, Zazzle, and Etsy to find some cool designs and support independent artists.
• Have your own idea for an EDS or HSD design? Check out Custom Ink to put it on a t-shirt for you, your zebra buddies, and your supporters! (A plain t-shirt and Sharpie markers work well too!)
• Start a fundraiser for your favorite EDS/HSD org. (Hint: it’s this one.)
  • It’s easy enough to do on Facebook, but you could do a local bake sale, yard sale, trivia night, costume contest, run/walk/roll/limp, car wash, chore auction, or other event your organizational skills feel up to.
  • Team up with another local non-profit organization: for every animal adopted from the local shelter, $5 of the adoption fee goes to your EDS fundraiser. Or monetary donations to the food bank in your area will be split with your EDS fundraiser for a specific period of time. Make sure you have a specific organization you are donating to so you can advertise on their behalf.
  • Team up with a local business: could a local coffee shop sell a special beverage for EDS/HSD Awareness Month (maybe a Zebra Mocha, with dark and white chocolate?), and part of the proceeds could go to your fundraiser? An ice cream shop may be able to do something similar with an ice cream creation. Some restaurants may donate a percentage of profits on one night to a specific organization—you just need to ask! (You can also team up with non-food-based establishments, but…people need food.)
  • If you’re under 18, make sure to get a parent, teacher, or other trusted adult involved.

• Volunteer with (or apply to work for) your favorite EDS, HSD, or related organization.
• Make your own zebra-strong playlist. Using YouTube, Apple Music, Spotify, or whatever way you listen to music, make a list of songs that make you feel strong, empowered, or otherwise related to your feelings about living with EDS and HSD. Yes, sad songs are allowed, but consider making two playlists: one with upbeat, encouraging songs and one with sad, more somber songs so you have a soundtrack no matter your mood.
• See a film about EDS and other related conditions.
• Make that appointment. I know, you don’t want to make the call. I know, it’s going to be a pain. I know, it may not help at all. But just make the appointment. You’ll be glad you did—you can stop thinking about it and feeling guilty about not doing it. If you decide you really don’t need the appointment, you can cancel it later—and how good will that feel?
• Donate to your favorite EDS, HSD, or other related non-profit, foundation, or charity.
• Join The Ehlers-Danlos Society and their “Acts of Awareness” challenges. (We think just living with EDS/HSD is challenge enough!)
• Give a talk about EDS and/or HSD (if this kind of thing doesn’t scare you to death!) Many libraries, community centers, schools, religious groups, and community organizations will welcome speakers on all kinds of topics. There may be local organizations that are related to EDS/HSD (patient and family advisory committees, local non-profits associated with a hospital or medical system) that would welcome a speaker or presentation. The talk doesn’t have to be about EDS or HSD specifically. It could be about one symptom, one part of your life, or an area of activism you feel strongly about. (Don’t forget to record it and send it to us so we can share it on our social media!)
• Listen to a podcast about EDS, HSD, hypermobility, and more.
• Read an EDS- or medically-themed book. There’s non-fiction, fiction, kids’ books, poetry, and much more.
• Add to your EDS toolkit.
  • First, assess what you have.
    • What helps you on days you don’t feel great? Think of everything, from meds to foods to favorite TV shows, pets, people, and more.
    • What tools (interpret the word as broadly as you need to) could you not live without? What do you reach for when things get bad?
    • What medications and supplements can you absolutely not skip?
  • Then, assess what you don’t have.
    • What areas do you need more help in?
    • Which symptoms always catch you by surprise or are really debilitating?
    • Who needs to be added to your team?
    • What’s been missing in your life that would make things easier? (Yes, three billion dollars, but what else?)
    • What have you heard helps other people? (It may not help you, but it’s worth looking into.)
  • Then, make that happen. Find a doctor, make an appointment, treat yo’ self, buy the thing, look for information, connect with an expert (and almost everyone is an expert in something), download PDFs, print tracking and coloring pages, buy some swag—you know what you need to celebrate! 

• Update your social media with people and organizations who share and write about EDS, HSD, chronic illness, and more.
• Give yourself a break. Is there an appointment, therapy session, social engagement, or other scheduled event that you can cancel, shorten, or reschedule? Is there a routine or chore you can give yourself a break from (or ask someone else to do)? Could your spouse or friend spend some time with the kids so you can take a nap? Sometimes, you need a little break—and it’s okay to ask for help.
• Subscribe to EDS- or HSD-related newsletters, Substacks, blogs, and updates from organizations.
• Share a kids book with a kid you know. They don’t need to have EDS—these books are about accepting those who are different and are suitable for all kids.
• Put your graphic design skills to work and make a sticker, brochure, postcard, poster, or yard sign about ESD or HSD. Share with friends, family, doctors, neighbors, and online friends.
• Learn more about EDS, HSD, chronic illness, disability, and more from reliable websites.
• Continue doing what you’re doing. Existing in a body with EDS, HSD, joint hypermobility, and all related conditions is hard enough on its own. Celebrate yourself and your success at making it this far—we sure are!

Leave a comment below with the ways you plan on celebrating EDS and HSD Awareness Month!