"Suffering the Slings and Arrows of Outrageous Fortune"

I hope you were able to watch the Q & A with Drs Neilson and Goldschneider last night. I thought it was a really good discussion and, if you did miss it, it will be posted on YouTube soon.

As I have mentioned, Dr. Neilson is my daughter’s geneticist and we previously saw Dr. Goldschneider before finding a pain doc closer to home. I have to say that I really appreciate the effort these two gentlemen have put in to this chat – both the hour of answering questions and the obvious effort to promote it in the weeks leading up to the event. The awareness that was raised because of this event is priceless – they both posted articles about EDS on the CCHMC blog and it was promoted on the Cincinnati Children’s Hospital facebook page. That awareness was such a blessing for the EDS community, so I just want to voice my thanks to everyone who was involved in putting together this event.

There were a couple stand out moments for me, at least, (which I will get to in a minute) but for the most part it was pretty standard stuff. You probably won’t be shocked to know that they recommend PT and cognitive therapy. (If you have been to Cincinnati Children’s for EDS, I know you have heard about how great biofeedback is. šŸ˜‰ ) Ā They did their best to answer as many questions Ā as possible – but there were so many people, asking so many questions, there was no way they could get to them all. Watching the participants chat as the discussion carried on, I really felt the desperation of the many, many people who need answers and help living with EDS. Obviously, these two doctors could only do so much at this event – there were questions that had no good answers and they even sort of joked at one point that they didn’t have all of the answers.

Like I said, most of the info was old hat for me and probably was for you too, but there were two nuggets of ‘new’ info for me:

  • Muscle Relaxers – Let’s just say that my recollection is that Dr. Goldschneider was not so favorably disposed towards them for EDSers last time we saw him. Ā I won’t go into details (because I am feeling magnanimous in light of how well Em is doing these days and because I really do appreciate his efforts for the EDS community) but, it was issue of several that we agreed to disagree on. So, when I heard him say that muscle relaxers are an important part of the tool kit for pain, I was happy about that change of heart. Not that EDSers should be on them 24/7, but they are extremely useful in certain circumstances. My daughter takes them to avoid muscle spasms at night and can take them as needed for spasms that result from injuries or dislocations. And both doctors stated that those are precisely the use muscle relaxants are useful for in the EDS population.

 

  • Numbers – (This one is the big one for me) Dr. Ā Neilson said he believes that EDS affects, not 1 in 10,000, 5,000, or even 2,500, but 1 percent of the population. 1% compared toĀ Ā .0004%, if MY math is correct! By his reckoning, that is about 3 million people in the US with EDS. Now, I am not too surprised about this because last time we saw him we had a discussion about the frequency of EDS. He didn’t give us numbers at that time, just emphasized that he was confident that the numbers were much, much higher than previously thought. I think we all suspected that EDS is not nearly as rare as once thought, but this is a big leap in the right direction and I found it fascintating that he was willing to go so far out on that limb that most of the other experts seem to avoid.

Anyway, it was very interesting conversation and as soon as the video of the conversation is up, I will share it here.

Did you watch? What did you think?

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