"Suffering the Slings and Arrows of Outrageous Fortune"

I am not sure where to start sharing our experiences at the Learning Conference this weekend, so I guess the best way is to just jump in. I will start with my overall impressions and plan on sharing specific items discussed in the sessions in the next post.

On Thursday, we got there just in time to go to the welcome reception – it was a good chance to get our bearings, chat with some of the attendees, and check out the venders. We stayed at the Embassy Suites, which was kitty corner to the convention center. The Marriott was directly across the street from the center, but both were very convenient.

Friday morning came very early – earlier for those who didn’t sleep through the power outage at the hotel. It was inconvenient at best (like EDSers need any help not sleeping) and scary at worst (those with power chairs or oxygen were relying on a full night’s charge to get them through the next day, not to mention that there were a whole bunch of people with wheelchairs or limited mobility on the upper floors, who were very vulnerable in a storm/ power outage). Unless you were us and slept right through it. I swear, I am a very light sleeper and slept very poorly that night. That hour or so of storm and power outage must have seriously been about the only hour I slept that night.

Anyway, the open session got started a little late, but it really was a big morning. Of course, it was nice to hear Dr. Tinkle speak, but one of the EDNF board members, really stole the show before the key note address. He shared some big plans the EDNF is working on. First, he announced plans for the creation of a research data bank, to gather and store blood and tissue samples, with the goal of fostering research. Which was a pretty impressive revelation all by itself.

Then he shared the really BIG news: the EDNF is in talks to push forward with the creation of an EDS Clinical Care and Research Center. This would be a center that would be affiliated with a hospital system and be a dedicated center where real experts in various specialties would be able to treat EDSers. The plan is that this would be the first of a network of centers that would eventually be built around the country. They are currently talking to 3 hospitals about ‘hosting’ this  facility, but there will need to be a big  fundraising push to make it happen. It does bring me hope though and I think that is exactly what it was designed to do!

That was an amazing way to start the morning and then we were off to a long day of sessions. (Like I said, I will go into specifics of those in a subsequent post. Likewise, I think I will talk about Em’s experience of attending on Friday in a separate post.) The food that was provided was ok – certainly could have been worse! I thought they did a great job of providing refreshments – fresh fruit and drinks and a lot of it.

On Friday afternoon, we also had the chance to talk to the Silver Ring Splint Company while Em was with us and they were kind enough to adjust Em’s thumb splints. (Our OT fought insurance so we could get a few splints last year, right as Em was getting so terribly ill. Whereas they were incredibly important to me then, they became less and less important as her neurological symptoms took over. And when they didn’t fit properly, we just had bigger  issues to deal with at that time. They have essentially sat in the box since we got them. So, it was great to be able to have them adjusted – maybe, just maybe, she will be able to use them now!)

One general thing that struck me this weekend was that the ‘superstar’ docs were walking in the halls with the attendees and even attending sessions, sometimes asking questions. I loved the fact that these brilliant minds and acknowledged experts were willing to continue learning about EDS. They were staying in the same hotels and eating at the same tables as the rest of us. That level of accessibility is really unique and very special.

On Saturday, the day opened with talks by Dr. Grahame and Dr. Francomano. I have to say that it was a real honor to hear Prof. Grahame speak – he is really a special, brilliant guy and the EDS community is so fortunate to have him on our side. It was interesting to learn that he became interested in hypermobility because his own daughter was in ballet and was hypermobile. I had heard so much about him and was not disappointed – he is quite amazing! Dr. Francomano spoke to the topic of pain management. I was pleased to hear her talk about the compounded ointment that she is recommending. I had heard about it before, but was happy to hear her describe how it was to be used. Definitely something I want to bring up with our pain management doc. Dr. Francomano seems exactly as nice as everyone has raved about.

Saturday was a lighter day session wise, at least as far as my personal plans. I was able to hit all of the important sessions on Friday, so I was able to take it a little easier on Saturday – I wasn’t taking any chances that I would miss Dr. Pocinki or Dr. Levy or Dr. Smith. Both days I had a chance to chat with folks who I know from online and also some folks I had just met. That was really a highlight for me.

Another highlight was the Q and A with the (basically) entire panel of doctors on the speaking roster. Since there was limited time for questions after most of the sessions, folks could submit written questions and then about an hour during lunch on Saturday was devoted to the panel answering those questions. Interestingly, the experts did not always agree on the answers and I thought that was actually pretty helpful in an odd way – I came away understanding that there really may not be one perfect answer for any issue. Personally, I like hearing various sides of an argument, so I appreciated the differences of opinion. At any rate, I thought it was a very wise use of time.

By Saturday afternoon, Andrew was getting antsy, not so much because he wasn’t enjoying himself, but because he was in a lot of pain. He did a fair amount of walking around over the weekend and ended up at the ENDF store a number of times. He bought me a bracelet. Then he bought Em a squishy zebra. Then he bought a wallet card with EDS medical info for Em. When I said he should buy two more, one for him and one for Luke, he huffed a little but went and bought them. Later he bought me Dr. Tinkle’s book. He also bought  numerous keychains that the kids were selling as a fundraising project and maybe a couple raffle tickets.

Saturday afternoon, once the sessions started winding down, we were able to go back to the room and get dressed for the banquet. Again, the food was fine – not stellar, but nothing to really complain about. I have to say, I have never seen so many zebra stripes in one place before as at this banquet – there were zebra stripes everywhere I looked! From the sounds of things, the silent auction was quite successful and the kids raised $2,202 for the EDNF.

There really is too much to really cover in one post – it was a long and busy weekend! I can say that I am so glad we were able to go, we all benefited hugely from the conference. It was really an amazing experience and we will do our very best to be able to go again next year. I want to thank the EDNF for putting on the conference and all of the volunteers who helped make it a success. The panel of experts really was fabulous and so helpful. From my personal point of view, the conference was a huge success. Andrew really got a lot out of it and we had some serious and important discussions. That too, might be fodder for a separate post. As I have said, this experience was all I hoped it would be and I feel very fortunate to have been able to go.


Comments on: "Conference Impressions" (5)

  1. Some of the best money we have ever spent!!!! So happy we helped make this trip happen!!

  2. Uh…my jaw just dropped. Do you remember, by any chance, what this compounded ointment had in it?
    Because I might be about to find out that my pain management doc is more awesome than I thought. I already knew he was pretty great when I said that the first pain meds I was on weren’t working, and better when I told him that despite insurance, I can’t always manage the 40 dollar copay a month and have been going for a couple weeks to a month on half-dosage or none (he upped the prescription to four capsules a day…meaning I take two a day and my prescription can last me two months when necessary).
    But when he prescribed me a compounded ointment on my first visit (that makes me a bit loopy sometimes but works like a charm) I figured it was a shot in the dark.
    Maybe he knows more about EDS than I thought.

    Which begs the question of why he shies away from anything with disability because he wants people to reach their full potential (found this out when I needed a doc letter for disability services at my college…as I told my mom, full potential is not reached if I flunk out after a semester of not finishing tests because I physically cannot do essays). But that’s a rant for a different time, and I am getting my letter, so it isn’t my priority right now.

    • Hey Erin,
      I did write it down, so I went and found my notes. The formula is done at Sheffield Expert Company – it is their formula H, with magnesium added. It has diclonfenac, baclofen, cyclobensaprine, Gabapentin, lidocaine, magnesium and lipoderm. (I don’t guarantee the spellings of those and I think I got everything on the list.) I have heard it is very expensive and comes from this specific pharmacy, so maybe this isn’t exactly what you are using? But, on the other hand, I wouldn’t be a bit surprised if other pharmacies are doing something similar that works in basically the same way. Dr. Francomano has been prescribing this for awhile and says that her patients report its ‘transformative’ effects on their pain. Which sounds pretty darn awesome! She talked about how it comes in pre-measured doses, you use half the dose, rub it in and wait a few minutes. If you need more, you use the rest of the dose.

      I guess you are getting good relief from whatever you are using, so I suppose the exact formula may not matter. But maybe you can use this list to talk to him to get even more relief if you need to. What a pleasant surprise that he was so on the ball and was able to really help you. (And I am glad he gave you your letter – my daughter was reading over my shoulder and huffed on your behalf when she read about how you had to put up with his goofy attitude about disability!)


  3. Mine doesn’t have the magnesium, but it’s nearly the same thing. It comes in pump-action bottles, use one to two pumps as needed, no more than 8 in 24 hours. It’s also apparently really expensive, and my doc said if the insurance doesn’t cover it, contact him, but thankfully it does and I got two bottles for a 10 dollar copay. They are both with me at college and one is with me at all times.

    I’m not even certain he knows about it…I got an email from the clinic he’s at saying that they have my letter, but he is out of town for the week and can’t sign it yet. They ended up faxing it as-is, and will re-fax it when he comes back and can sign it.

    I appreciate Em’s response, that’s what I was doing too. Sort of “you’ve gotta be kidding me! This man has never had a chronic disability, or even so much as a broken leg, because if he had, he’d understand that sometimes there are things you just can’t do. He can’t fly, my brother can’t sing, and I cannot write an essay or notes for a class.”
    I actually tested that a few months ago…started copying from a book, writing fairly quickly. I got about half a paragraph before my hand cramped up, finished the paragraph, and had to stop and massage my fingers out of their curled talon look and my wrist into not screaming when I picked up a writing implement. Thankfully, I can type pretty well and my hand doesn’t yell as much.

    • Yeah, there are some doctors whose bedside manner would benefit greatly from an experience of sudden illness or injury. Chronic or otherwise! And there are a few for whom I would be delighted to provide the experience! 😉 This guy sounds like he could benefit from knowing what his patients go through! I bet he would be whimpering in a corner if he felt your pain for even a few minutes.

      But, it sounds like he was on the ball with the ointment, so that much is good! I am hoping that our hospital pharmacy will be able to compound this formula H or have something like it available. I know our insurance won’t pay for the Sheffield company to make it for us, but your prescription makes me hopeful that something similar would be availble for Em. So, thanks for sharing!

      Hopefully you get that letter signed and it helps with your disability status. Thank God for lap tops and tablets – technology is the way to go with EDS!

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