If you have Ehlers-Danlos Syndrome one of the very first things you would have done is learn how to pronounce and spell it. And it’s not something you are going to forget anytime soon: just about every appointment you go to, you have to pronounce it if it’s written somewhere, or spell it to someone if they are writing it down (doctors included). Why is that? Because not enough people have heard of it.
They say in marketing & advertising that someone needs to hear about a name or brand at least 7 times
before they will engage and buy something. I believe similar is true for people becoming aware of medical diagnoses!
So lucky for us, May has traditionally become Ehlers-Danlos Syndrome Awareness Month!! That’s pretty cool. We have a whole month to raise awareness about this condition that very few people know about, let alone know how to pronounce or spell.
If you think about it, it’s like that with anything. For example, none of us knew what haemophilia was until we studied history at school and learned that Prince Alexi Romanov, son of Tsar Nicholas II had haemophilia. We couldn’t spell it the first few times we had to write it, if we could even remember what the condition was that made him bleed a lot. But now! Now we know what it is because we heard it over and over and over in history classes. And of course, it’s now far more easy to “know” about these things because of this amazing thing called the internet.
I’d say 95% of people in Western English speaking countries know what Diabetes is….Because we have heard about it over and over. Gestational diabetes, not so much because the term isn’t thrown around as much. Do you know what Trachoma is? (If you do, bravo, my sister at Fred Hollow’s Foundation will be proud) No? That’s because we haven’t been exposed to the condition or the word enough to know (go on, google it and find out about something that effects millions of people around the world). What’s my point?
We need to SHOUT A LITTLE LOUDER about Ehlers-Danlos Syndrome.
We need to make sure people hear about it (7 times remember), then they can remember it and begin to learn about it (they may even try to pronounce it!). My challenge to you is to get the words “Ehlers-Danlos Syndrome” out there at least 7 times to people in your social media networks in the next month. You never know, you might just help someone get a diagnosis they have been searching for their entire life. You just don’t know.
And… it will help you & me. Raising awareness helps us to educate people; it helps people accept this condition more and understand it’s effects on us, and it helps connect people to the right information.
So – go forth my social media maestros, get talking & sharing about Ehlers-Danlos Syndrome!
Michelle is a Senior Occupational Therapist working solely with adults with hypermobility and related conditions. Michelle is the owner of Hypermobility Connect, an online platform for people with hypermobility to connect with resources, health professionals & each other. Michelle practices OT in her private practice and provides education to health professionals relating to hypermobility conditions.