May is EDS awareness month
Yesterday two journalists came by. One for an article for a local newspaper, “de zakengids”,about the sponsor run and one for “de Tielenaar”.a online news site
Initiators of the run, Karla and Esmaralda, also came by to tell their story. It’s special, so many people together, all to help me. More than 40 people have already signed up for the run. That’s great!
This month it is also Ehlers Danlos awareness month. A good moment to ask for some extra attention for eds. So many people are still without a diagnose So many people who are told that they are imagining. So many people who are told: You can’t put your joints back on yourself.. So many people in tremendous pain, who are still not believed. And are you finally diagnosed? Even then, no doctor knows what it means and believes you? that is completely rare. A doctor receives 15 minutes of eds lessons during his entire training. Far too little if you ask me. It’s understandable, there are so many diseases to learn about. But at least listen to your patient. To the one who has not learned for 15 minutes, but lives with it for years! Listening is so important. Forget your white coat, forget your huge ego and help where you can.
EDS cannot be cured, but by thinking along and helping with good braces, for example, so much suffering can be prevented. Not only physically, but also psychologically. There are so many eds patients with physician ptsd. That must stop! Doctors should help you instead of slamming the door against in your face again and again. And it all starts with a little awareness. So spread the word.
EDS isn’t rare, it’s just rarely diagnosed.