Tips on Raising EDS and HSD Awareness

Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) need more awareness and understanding. The medical community needs to know these conditions exist, how to assess patients for them, and how to treat the symptoms they cause. The general population needs to know these conditions exist, what they are, and how they can affect people. You as EDS and HSD patients can help raise awareness in both the medical community and the general population.

Living with EDS or HSD gives you experience and expertise. Telling your story creates better awareness and understanding.

When you raise awareness, you want to appeal to:

  • The Head – What do you want them to know?
  • The Heart – What do you want them to feel?
  • The Hand – What do you want them to do?

Who your audience is will determine if you need more Head or Heart in your awareness presentation. For example, when talking with doctors, they like facts and information. So with doctors, you want to provide more facts and information to fill their heads. With the general public or with reporters, they respond more to stories that make them feel something. So with this audience, you want to focus on touching their hearts. With any audience, you will appeal to their Head, Heart, and Hand, but depending what audience you have, you will want to provide more Head or more Heart.

Every audience needs to know what you want them to do, i.e., the Hand. Do you want your audience to recognize EDS and HSD after your presentation? Do you want your audience to change their mind about a proposed legislation? Do you want them to teach others what EDS and HSD are? It is important in any awareness effort to decide what you want them to do with the information and stories you provide.

You do have a personal responsibility when raising awareness. Realize you are representing the EDS and HSD community. Learn about the topic you are presenting. Aim for a balanced approach so as not to turn off your audience. And make sure you are providing accurate information and saying “I don’t know” when appropriate.

Your perspective is valuable when raising awareness. Maybe you can share what life is like for you with EDS or HDS. Or what it feels like to live with chronic and acute pain. Or what it is like to dislocate unpredictably or know a medical crisis can occur at any moment. Your story is powerful and no one can argue with it so use it to strengthen the facts and information you also share.

When raising EDS and HSD awareness, determine who your audience is. Your audience may have their own agendas so be mindful of them. But raising awareness can take a physical toll so pace yourself and care for yourself when needed.

Raising EDS and HSD awareness is not just about speaking to large audiences. There are many teachable moments each day. You can raise awareness when:

  • Talking with your doctors
  • At get-togethers with family and friends
  • Faced with an angry glare when using handicap parking
  • Commenting on online forums or articles
  • There are serendipitous moments in public

Any moment can be an opportunity to raise awareness and understanding so be ready.

While you can raise awareness on your own, it can be more fun and have less of a physical toll when done with others. You can raise awareness with one or two others who have EDS or HSD. You can join a local EDS and HSD support group and plan awareness events together. If there is not an EDS and HSD support group near you, you can start one. [link article]

There are many ways to raise awareness so use your talents and interests to choose how you will do it. May is EDS and HSD Awareness Month, but awareness can happen any time of the year. Here are ideas for how you can raise EDS and HSD awareness:

  • Volunteer to be a practice patient at a local medical school or hospital
  • Attend medical conferences, talk with doctors attending, and pass out EDS and HSD brochures (https://ehlers-danlos.com/brochures/)
  • Ask your doctors how to reach their colleagues and talk with them
  • Hold a webinar, presentation, or speaking event
  • Present at a local community meeting such as a Girl Scout/Boy Scout meeting, Parent Teacher Organization, Health Support group meetings, or Faith based group and pass out EDS and HSD brochures (https://ehlers-danlos.com/brochures/).
  • Contact organizations in your community to recognize and hold EDS and HSD Awareness Month activities in May.
  • Write to legislators to inform them of awareness month and ask for their participation in your events…push to have your state or country declare May EDS and HSD Awareness Month.
  • Arrange for a local library or community center display on EDS and HSD including posters about EDS (https://ehlers-danlos.com/wp-content/uploads/EDS-Tabloid.pdf) and HSD (https://ehlers-danlos.com/wp-content/uploads/HSD-Tabloid.pdf).
  • Designate the Ehlers-Danlos National Foundation as the charity you donate to with each Amazon purchase through Amazon Smile: http://smile.amazon.com/
  • Consider volunteering with the Ehlers-Danlos Society (https://ehlers-danlos.com/volunteer-form/), NORD, Rare Disease Advocates or others.
  • Post information about EDS and HSD frequently on Facebook, Twitter, Instagram, and other social media. Direct readers to the Ehlers-Danlos Society’s website for more information (ehlers-danlos.com).
  • Start a local support group [link article]
  • Provide posters and flyers to schools, gyms, doctors’ offices, hospitals, and other public areas. [link to what we have]
  • Hold a fundraiser to raise funds for the Ehlers-Danlos Society. Fundraisers may be bake sales, car washes, a sponsored night at a restaurant or club, a run/walk/cycle event, or anything you come up with. Every bit helps.
  • Decorate your car with EDS information, wear an EDS T-shirt you made or purchased, put a sign in your window or yard.
  • Have conversations about EDS with the person behind you in line at the store, at the park, or while picking up children from school or activities.
  • Visit forums where people are describing symptoms, let the members who sound like they may have EDS know what it is, and where they can find more information about EDS (i.e. ehlers-danlos.com)
  • Paint or photograph EDS and HSD related images and share those.
  • Submit articles to those who publish them, like the Ehlers-Danlos Society’s Loose Connections (https://ehlers-danlos.com/loose-connections-emagazine/), The Mighty (https://themighty.com/submit-a-story/), local newspapers, and other sites which publish the stories of and articles written by those with health conditions like EDS and HSD.

You are the perfect person to raise EDS and HSD Awareness. You can make a difference. Will you?

If you’re interested in estalishing a support group, please see our page Starting and Running an EDS and HSD Support Group.