Friday, May 5, 2017

How YOU Can Raise Awareness for Ehlers Danlos

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  

May is Ehlers Danlos Syndrome Awareness month!  As all four of my kiddos and I have hypermobility EDS or hEDS, this month is pretty important to my family.

To help raise awareness for EDS, I put together a list of resources and tips that can help you share the word and teach others about EDS.

How YOU Can Raise Awareness for Ehlers Danlos

First of all, you're going to hear "Huh. I've never heard of that. What is it?" a lot when you tell people that you have Ehlers Danlos Syndrome.  It took me quite a while to come up with a rehearsed response to that so I didn't stand there and stutter like an idiot (thanks, brain fog!) and even now, I find it helpful to be able to hand the person a card explaining what it is and then answer any questions they have after reading it.  So, I made up double sided business sized cards with some basic information on EDS that are easy to carry in your wallet so you have one handy whenever you get questions.  They're available in the Sunshine and Spoons Shop.

Ehlers Danlos Syndrome EDS Awareness Cards

I also have a full-size sheet with EDS facts available for you to download for free if you want something with a little more information.

Ehlers Danlos Syndrome EDS Awareness Sheet

Silicone bracelets are really popular and a great way to raise awareness, but after spending several days futilely searching for some EDS ones online, I decided to have some custom made, and make them available in my shop for others as well.  You can find them here.

Ehlers Danlos Syndrome EDS Awareness Bracelets

Another great way to raise awareness is to get outside of your comfort zone and contact your local media to ask them to do a story on EDS.  I did this and ended up being interviewed by our local paper and two local tv channels!  My kids thought it was the coolest thing ever to be in the newspaper and on tv.  You can see one of the stories here.

If you have kids in school, ask their teachers if you can come in and read this book on EDS, "Special Like Me", to the kids or just talk to them about it.  I did this with Nano's 1st grade class and Katie's 3rd grade class, and the kids loved learning more about what their classmate has.

"Special Like Me" Ehlers Danlos Syndrome EDS Awareness book for kids
Katie was so excited to have a book about kids with EDS.

I  also found some really fun things on Etsy for raising EDS awareness!

This shirt from Shop HOPE Apparel has a definition for EDS right on the shirt!  No explaining necessary-just point to your shirt ;)

Ehlers Danlos Syndrome EDS Awareness Shirt

Putting a vinyl decal on your vehicle is also a great way to raise awareness for EDS.  I found some nice ones that can be purchased in different sizes at Vinyl Disorder.

Ehlers Danlos Syndrome EDS Awareness Decal

Kat Makes Stuff has a bunch of cute Ehlers Danlos awareness necklaces.  I think this one is my favorite.

Ehlers Danlos Syndrome EDS Awareness Necklace

And of course, don't forget to check out the selection of Ehlers Danlos shirts and mugs that are available in the Sunshine and Spoons Shop!  I even have an affiliate program so you can share them with your friends and earn some money.

Memes are an awesome way to raise awareness!  With that in mind, I designed a meme for each day of the month (plus some extras!) for anyone to use and share that you can find on the Sunshine and Spoons Facebook page.

Stickers are a fun way to spread the word about EDS.  You can get these stickers in the Sunshine and Spoons Shop. 
Ehlers Danlos Syndrome EDS Awareness Stickers
How YOU can help raise awareness for Ehlers Danlos this year: 

Do you remember the Ice Bucket Challenge that raised so much money for ALS?  Did you know that EDS has a challenge as well?  Try out the Lemon Challenge and make sure to challenge five of your friends to do it too!  If they don't want to do it, they can donate money to Ehlers Danlos Syndrome research instead.  You can get cards for the Lemon Challenge in the Sunshine and Spoons Shop.

How are you raising awareness for Ehlers Danlos Syndrome this May?  Join me in the Sunshine and Spoons Group so we can talk about it or leave a comment here!

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  1. I love the bracelets and T-shirt...such a great way to raise awareness in style. My college roommate and best friend has ED and seeing her challenges has definitely opened my eyes to the struggles people with ED can have....

  2. You may get the bracelets through EDS Network CARES Foundation along with pamphlets, brochures, medical cards and much more. Go to:


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