Yesterday something happened that made me understand that what we have endured has a purpose and that our efforts to promote EDS awareness are paying off.
I happened to see Em’s ‘old’ therapist, “C”, yesterday morning. He asked after Em, since she was not with me and then casually mentioned that he thought of her recently, because he has another young patient with some sort of connective tissue disorder. They aren’t sure exactly what, but he was able to discuss EDS with them because he knows so much more about it now. In large part, I know, because of Em.
It was a brief, rather inconsequential comment – small talk, really – but it really meant the world to me.
It means that our efforts to shine a light on this horrible condition are bearing fruit. It means that another child/family might get earlier intervention than Em did and thus have a better chance at keeping the worst at bay. It means that this child or another child might benefit from Em’s experiencing the many, many confusing symptoms and co-morbid conditions that go along with EDS because it will be familiar to this therapist.
It means that we can have hope that in the bajillions of times that we have talked about EDS to this doctor or that one or this therapist or that PA, dropping facts and helpful information into every conversation we could, a few of those kernels of knowledge will have taken root and might be used to help someone else.
Sadly, sometimes our brightest hope is that we can make it better for the next generation of EDSers. It is so easy to get discouraged in the face of the monumental task we undertake. But, there is hope and every little step you take to promote awareness is important. Sure, some of the facts you share will fall unused to the wayside, but some of them will find fertile ground – and since we never know which will be the case, we just have to keep talking and doing. We may not ever see the fruits of our labor, but we can have faith that there is fruit and progress is being made.