May means more than spring weather and sunny days. To those of us living with Ehlers Danlos Syndrome it means a month of promoting awareness, of our voices being heard. I know for myself, this is something I am passionate about. Probably because I wish that I had heard of EDS before my daughter had become so ill. I will always wonder if we could have prevented some of her problems with an earlier diagnosis. I feel like the least I can do is share what I have learned – sometimes through very hard lessons – with others.
I don’t have a lot of resources to use in this quest, but, fortunately, there are many easy things we can all do to promote awareness and bring attention to this life changing condition.
Here are some ideas:
- Use social media – facebook, blogs, twitter to easily share info with family and friends.
- Ask your Governor to issue a proclamation stating that May is Awareness Month in your state.
- Create and wear a shirt/button/nametag that says ‘Ask me about EDS’. Make an eye catching design that incorporates info about EDS.
- Use Zebra themed clothing to spark conversations – be creative.
- Set up a table at a medical conference, hospital or physical therapy center in your area to educate others about EDS.
- Educate your doctors by printing out a set of Medical Resource Guides from the EDNF for each of your medical professionals.
- Contact local radio stations to play our public service announcements available from the EDNF website. Follow the link to download them.
- Contact your local newspapers and submit your story about EDS.
- Do a fundraiser: a walk, a bake sale, a garage sale, a lemonade stand. Contact a restaurant to sponsor an event by giving a percentage to EDNF for the day’s receipts. Put up signs explaining EDS and provide information.
- Educate your doctors by sharing printed materials from EDNF and other groups.
Those are just a few ideas to get you started – every little bit helps. I will be posting EDS info everyday on Facebook and I have changed my profile pic and cover photo to a zebra theme. I will continue to use this blog as a platform to speak about awareness. Beyond that, I will have to wait and see… Life has intruded on my plans a bit and I might have to simplify after Em’s surgery.
What are your plans for EDS awareness month?