Make May Matter: How to Raise Awareness for Ehlers-Danlos


May is an important month for me. Not only is it the month of my birth, but it is also Ehlers Danlos Awareness month. Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. The Ehlers-Danlos syndromes (EDS) are currently classified in a system of thirteen subtypes.

I have Hypermobile Ehlers Danlos Syndrome (hEDS).  The diagnosis of hypermobile EDS (hEDS) remains clinical; there is no molecular, genetic cause yet identified.

In order to help spread the word about EDS awareness, I wanted to create a list of ways people can get the word out this month, and really use this month to make a difference.

Here are some ideas:

  1. Use Twibbon to create a zebra print profile picture on Facebook! This is a quick and easy way to get the word out. Zebra print is the “awareness color” for Ehlers Danlos Syndrome. Click here to use Twibbon. image
  2. Participate in The Lemon Challenge! This is similar to The Ice Bucket Challenge for ALS. The concept is simple, and there is even a graphic for you to share with your 30 second clip. imageimage
  3. Go Live! Your Facebook friends get a notification whenever you go live. Create a short video of you discussing Ehlers Danlos Syndrome and why raising awareness matters to you. Make it fun!
  4. Share an infographic! These are easy to read informational images. The Ehlers Danlos Society is sharing one every day in May on their Facebook page. Like their page to see a daily post. image.jpeg
  5. Put up a poster! If you can get permission from your school, place of business/work, or local a public bulletin, go ahead and use it as a means to share. The Ehlers Danlos Society offers a free poster that you can print and display.
  6. Contact local media! This one is a little more difficult, but if you have the time, try reaching out to your school news, whoever writes your weekly work newsletters, or even a local news paper or news station and see if they would be willing to do an article/segment on EDS.
  7. Wear Stripes! The Ehlers Danlos Society is selling zebra merchandise to help raise funds for research into EDS. You can purchase EDS awareness merchandise here.  image
  8. Sell zebra ribbons to fundraise for EDS. If you want to raise money for EDS, consider printing zebra ribbons and selling them, or making zebra ribbons out of zebra craft ribbon to sell. image
  9. Do a 50/50 raffle! If you can talk to your school or workplace, see if they will allow you to arrange a 50/50 raffle to raise money for EDS! image
  10. Add a signature to your e-mails! If you routinely send e-mails, add a quick signature about EDS awareness. image
  11. Decorate your lawn! If you live on a busy street, consider putting up a homemade sign, zebra lawn ornaments, or painting “EDS Awareness” on your front lawn. image
  12. Have a conversation! The easiest way to spread awareness is to have a conversation with someone else. Spark a conversation with someone around you every day to try and get the word out. Tell a teacher, your hair stylist, the cashier at the grocery store, your friend, someone at a party, the new intern at the office…literally anyone who will listen. Tell them about EDS and your efforts to raise awareness.

I hope this gave you some ideas on how to make May a great month for EDS awareness. If you want more information on Ehlers-Danlos, please check out The Ehlers Danlos Society.

Thanks for reading!

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