The Ehlers Danlos National Foundation’s Conference was this past weekend and I missed it. I have read the comments on their FB page and read posts on the forum with a fair bit of envy – I really, really wish I could have gone. Last year, I had come to the realization that my daughter really did have EDS about a month before the conference. There was no way I could go last year – it is rather expensive, definitely not room in our budget for such an expense on such short notice, and Em was getting worse by the day last summer and there was no way she was up to a trip like that. I had vague hopes for being able to go this year, but didn’t happen. Again, no money and she is even worse than she was last summer.
It is ironic that, as my daughter continues to get worse, the one event that could help me help her is out of reach! I am firmly in the camp that believes knowledge is power – the more I know about this condition, the better I can help my family. Hence my daily internet surfing to find every nugget of information that could be useful.
There will be conference information trickling out from the people who attended – thank God for the internet – and there is info posted on the web site, but there is really no substitute for being surrounded by others who are in exactly the same situation as you and hearing from experts about the finer points of this condition. This condition is particularly challenging in that most doctors have never even heard of it – or if they have, it was a single paragraph in a textbook in med school. Add in the fact that the faulty collagen affects every single part of the body and results in serious complications that few doctors understand and you get a situation where the patient must be the expert because no one else is.
For those of us lucky enough to have a specialist like Dr. Tinkle overseeing our care, the burden is lifted a bit. After all, at least he knows what he is doing – he is one of the foremost experts in the country, even in the world. However, it is still our responsibility to be the captain of the medical team we are assembling. We must go into every appointment with as much knowledge as possible – which is why the EDS conference is so vital.
Another reason I want to go to the conference is that I would love for my daughter to meet and make friends with other kids her age who have EDS. The conference would be ideal for that. Right now she is totally against making EDS friends – but maybe by next year she will be a little more open to the idea. I think she would benefit from getting to know other people who also have EDS, but she is early in the process of accepting this is a life long condition and she needs time.
So, I am writing this post as a reminder for myself through this next year: I am making a promise to myself that *somehow* I will make it to the conference next year. Somehow!