"Suffering the Slings and Arrows of Outrageous Fortune"

Finally home after the conference. Whew! I don’t even have EDS and I am totally exhausted! But it was a great time and I am so glad we went.

I will post again soon and really lay out what we learned and saw and heard. But for now, I will just hit some highlights.

First, it was great meeting some of the folks who I have talked to online for months. So nice to put faces to the online name and have a bit of a chat. I wish there had been time for more, but am very thankful for even a few minutes. I feel very blessed to have these folks in my life!

Second, it was great to meet some new friends. You just kind of feel like everyone at the conference is family, so it is no big deal to strike up a conversation with a stranger. I realized after a just couple sessions that I was surrounded by ‘Emilys’ – everywhere I looked someone was putting a shoulder or hip or knee back in. Not to mention that there was a plethora of braces, ring splints, scooters and wheelchairs. That familiarity made it feel a little like a family reunion, so really, there were no strangers.

Third, this experience was everything I hoped it would be. Em had a great time and had a chance to hang out with kids just like her. I cannot say how priceless that was. Andrew had a great time as well, and I think it was possibly even a transformative experience for him. At the very least, he understands EDS much more and understands his kids better. Whether he will apply what he learned to himself, remains to be seen. He will likely put up a good fight, but I don’t give up easily either. 🙂

Fourth, we came away with some ideas and strategies to help Em continue to improve. The mast cell doctor (ironically named Andrew Smith) was incredible, Dr. Agnew (podiatrist) gave some great info about the foot and ankle that I think will be helpful, Dr. Pocinki was brilliant, I really liked Dr. Mitakides (TMJ expert from Dayton) and, allegedly, the shoulder instability talk was informative but Andrew went to that one for me and the notes he was supposed to take for me are all in his head.

Mainly, we came away feeling validated, not at all alone in facing the daunting task of living with EDS, and downright hopeful for the future. There are some brilliant minds working on improving the lives of EDSers and a whole bunch of people working to make sure the dream of a dedicated EDS Clinical Care and Research Center becomes a reality. Hope is a precious, precious commodity and I think that was the best gift we received this weekend.


Comments on: "Post Conference Ramblings" (2)

  1. I was having to get finger splints measured for my daughter during the Mast cell talk. Wher is Dr Andrew Smith from? I too loved Dr agnew. We saw him for a drs appt on Thursday! My daughrer , 21 also enjoyed meeting others just like her!!!

    • Dr. Smith is from Cincinnati. I *think* he is at the VA hospital, but he said he would definitely see EDS patients, so I am not exactly sure. I do know that I liked him enough that I would be willing to give him a try. There is a mast cell specialist (Dr. Abonia) at Cincinnati Children’s, so we will probably try him first, but it is really nice to know that we might have another option if he doesn’t work out.

      The conference was great, wasn’t it! So many great minds to learn from!

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