"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘EDNF’

Balance is the Key Part 2

Starting where I left off in Part 1

So, it took me a few days to identify exactly why I felt uncomfortable at certain points during the conference – this whole ‘don’t let fear hold you back’ thing was a little perplexing to me. It seemed so absolutely clear to me that ‘balance is the key’ that I was quite frustrated at times that we were being given a different message. Once I figured out that most of the advice being given was most applicable for the mildly to moderately affected EDSer and not terribly helpful for the severely affected, like my kid, I  became even more frustrated.

Before I go any further, let me say that I don’t mean to be [too] critical of the EDNF or the roster of speakers. My family benefited greatly from the conference and I am deeply appreciative of everyone who contributed. And I totally get that the individuals who spoke are not just doctors, they are humans, and had real limitations:

  • Time  Those 45 minute sessions flew by. The speakers had very limited time in which to share their knowledge with and answer questions from a very intense crowd. There was simply not enough time to say everything that needed to be said, so the speakers had to just do the best they could.
  • The Audience  Any speaker has to know their audience and speaking to the EDS population is no exception. The majority of people attending the conference, by default, were on the milder end of the spectrum and that is who was spoken to for the most part.
  • Not enough research  While the roster of speakers included the best minds working on EDS and who are, by all accounts, very dedicated to the EDS cause, the fact remains that we just don’t know everything we need to know about EDS to effectively treat it. The speakers are not to be blamed for that – they are doing the best they can with what they have. Until we know more, we are all groping blindly for answers.
  • Caution  They have promised first to do no harm to the patients they are trying to help, and so, they parse their words and try to give advice that makes sense while not rocking the boat. Of course, the definition of caution seemed to vary from individual to individual, so that wasn’t terribly helpful.

And there my patience and understanding wanes. Because the big issue at hand here, I believe, is a thorny one that isn’t being addressed for a variety of reasons. The biggest of which is politics, which I have no tolerance for whatsoever. I don’t want to delve into the politics of this and name names, but I know for a fact that it exists. I’d rather focus here on the results of this attitude…

There are lots of people with EDS who manage pretty well. They have issues that they manage and they get on admirably with their lives. The message of ‘don’t let your fear hold you back’ probably resonates, I think, with these folks.

But, there is a significant segment of the EDS population for whom the condition is not easily managed – they have a nasty constellation of symptoms that are challenging  and fairly resistant to treatment. The doctors have had precious little to offer these patients who are so very ill up to this point. Autonomic Dysfunction? Drink lots of water and up your salt intake. Severe, intractable headaches and other neurological symptoms? Got to be craniocervical instability – you need a fusion. Hmm, it didn’t work well? Ah, that is unfortunate. About the rest of your weird symptoms? No clue, sorry.

Because there has been little to offer this group in the way of effective treatment, they get essentially ignored. Which I suppose was perhaps understandable when there was nothing to offer them, but since those elusive answers are now within our grasp, thanks to the Driscoll Theory, I have a real problem with this group being swept under the rug.

Dr. Diana Driscoll has been working tirelessly and has hit upon real answers which she has generously shared with the EDS population. Many of us have experienced the life changing answers she has shared – in the form of Diamox, mast cell treatment and CCSVI – and would have appreciated the opportunity to discuss it at the conference. It would have been lovely if we could have heard Diana speak, to ask questions, to have a chance to discuss it. To have these issues addressed by anyone instead of ignored. But Dr. D was not invited, the desperately needed answers were not shared or even discussed, we were just told to not allow our fear to control us and this group of very ill EDSers were swept under the rug. Again.

If you tell me, the mother of a very ill child, to not let my fear hold me back , I am going to look at you like you are nuts. I will not thank you for your homey wisdom and trite cliches. Seriously.

As are so many others like her, my kid is dealing not just with constant, painful dislocations and high levels of pain that are so common in EDS, she also has debilitating neurological and autonomic dysfunction  symptoms (admittedly vastly improved since starting the Diamox), life altering food and environmental sensitivities (admittedly vastly improved since starting the Zyrtec/Zantac combo) that indicate mast cell disease, ‘typical’ EDS GI motility issues, anxiety,  pectus carinatum, TMJ issues, eye issues and the list goes on.

We – SHE – deserves answers and if you don’t have the answers to our problems, don’t patronize me by saying I should rise above my fear. Don’t tell my kid she should push through and ignore her problems and not be afraid. Because the advice to not let fear hold us back starts to sounds an awful lot like ‘you are imaging how bad it is’. Like ‘you are exaggerating the magnitude of your troubles’.  Like ‘it couldn’t possibly be that bad’. It feels pretty darn condescending, to tell you the truth. We have enough disbelief from the medical community, we don’t need it from our EDS experts.

In Part 1, I talked about how balance is so important for EDSers in addressing their myriad of problems and I am truly convinced it is the key. Well, now I am going to suggest that the medical folks who are going to bat for EDSers to apply a little ‘balance is the key’ to their thinking. Why not look at the possibility that Dr. D has hit upon the answers to help us? Why does it matter who figured it out if people are being helped? Is there not room for diverging opinion? (You proved that there is on Saturday when you all sat on a panel for the Q and A and disagreed with one another right and left. Why can Dr. D not be part of those diverging opinions?) A little balance would do us all a world of good in this matter, in my opinion.

Hmm, for that matter, I think ‘Don’t let your fear hold you back” could apply here as well. Maybe they need a dose of their own medicine… I get that they are being cautious for good reason, I really do. But, the same people who are proponents of cervical fusion and appear to view it as having approximately the same risk as eating candy, are too afraid to consider or even discuss a little pill which has been used for years and is helping people avoid surgery. That seems a wee bit insane to me, I must confess – that the least invasive option is demonized and the most invasive option is lauded makes no sense to me whatsoever. Is fear holding them back? Or is their concern valid? Perhaps, and here is a novel idea, we should be able to discuss it like adults?

I got a lot of good out of the conference and I don’t want to minimize that, really I don’t. It was a wonderful experience overall. With anything in life, there is both good and bad. But, this whole ‘don’t let your fear hold you back’ thing clearly has stuck with me. It stuck with my daughter as well and I have to say that I am not loving that. She and I have talked extensively about the conference and she has shared that her experiences were similar, so I don’t think I am really on the wrong track here.

All I want is for the powers-that-be to acknowledge the real possibility for viable treatment options for  the most challenging problems EDSers face. To acknowledge that Dr. D is on to something and simply be open to considering her work. A little bit of balance. And for their fear to not hold them back from offering help to those who really need it.  I don’t think that is too much to ask…

Balance is the Key Part 1

The official theme of the 2012 EDNF Learning Conference was Living With EDS. And don’t get me wrong – it was great,amazing, awesome. We learned a lot and I am very grateful for the opportunity to attend. I appreciate the efforts of everyone who worked to make the conference a reality – EDNF staff, volunteers and speakers alike. But, (and there is always a ‘but’, isn’t there?) I have some mixed feelings about some of what was put forth.

If the official theme was Living With  EDS, then the unofficial theme was Don’t Let Fear Hold You Back. Which is great and all and I would have a hard time disagreeing with it on paper. I just found it a little strange to be bombarded with that concept because the recurring theme thatkept coming back to after each session was Balance is the Key.

I have to be honest, I didn’t totally get the direction that some of the speakers were taking us. And, to be fair, most didn’t go there and even those who did, I think, would readily agree with the concept of balance. There is a pretty wide range of opinion among the EDS experts – which is somewhat entertaining (particularly when they are all in the same room answering questions) but also somewhat unnerving. I suspect that they would be more in agreement than not, but I heard enough contradictory advice that really made me doubt that. What each speaker actually says and what the listeners actually hear, really matters. And, what came through for this listener was a consistent emphasis on issues and concepts that were, perhaps, not totally helpful and somewhat confusing.

For instance, in the Parents of Children with EDS Discussion Group, which was facilitated by a very knowledgeable doctor/mom who has EDS and which ended up being more of a Q and A with her instead of being a discussion group, a question came up about a basically asymptomatic child with a strong family history of EDS, who was having foot pain while playing the goalie position on his ice hockey team. The answer below came among other answers to other questions like ‘your kids are manipulating you and playing the ‘I am tired’ or ‘I hurt’ cards to avoid doing things they don’t want to do’ and an apparent lack of concern for the child who has had multiple fractures but continues to cheer. While I firmly believe that each family living with EDS must answer the sports question based on their own situation, there being no one right answer, I was a bit flummoxed by this and was stunned by the departure from the cautions we personally have been given by most of the doctors we have seen. I was sitting there thinking about all of the adult EDSers who were irreparably damaged because no one intervened when they were children and wondering why caution was absent in 2012…

The Don’t Let Fear Hold You Back answer to the hockey question: It is true that the initial statement given in response was that perhaps hockey is not the ideal sport for a kid with possible EDS, but that was quickly followed up with the suggestion that you can’t put  kids on a shelf, you gotta let them live, just give him orthotics and wait and see what happens.

The Balance is the Key answer (aka my opinion): No, you can’t put EDS kids on a shelf, but as a parent you sometimes have to make really hard, unpopular decisions. At the very least, the child in question should be given opportunities to enjoy a variety of activities, athletic and otherwise – all children should be well rounded and that is particularly crucial for EDS kids. If the time comes when hockey is no longer feasible, the child should have other activities he loves to fall back on. I speak from personal experience: it is devastating to watch a child lose the activity which defines them. Parents have the power and authority to guide their children into the least damaging activities and, for goodness sake, if you know about EDS before your kid has a life altering injury, you have the chance to protect them and teach them how to protect themselves at the same time! A beloved sport does not have to be an all or nothing proposition: you can tweak and make adjustments, avoid competitive versions and so on, but sometimes you have to walk away for your own good. Figuring out which is the right answer at any given moment is a valuable lesson for a child with this life long condition. It really is about finding the right balance – you might have to fight to find that balance, particularly since it is constantly changing but that should be the goal. 

As I already mentioned, in the ‘discussion group’ the topic of  ‘how do I know when my kid is playing me’ came up. The question involved my kid ‘miraculously’ is able to do fun things, but avoids the not-so-fun things.

The Don’t Let Fear Hold You Back answer: Yes, your kid is playing you. You have to be tough, make them get up off the couch. They don’t get to do anything fun until they manage to go to school all day. I went to medical school, I had 4 kids. You have to push them to achieve. (Admittedly, this is a simplification of what was said, but I don’t think it is inaccurate – at any rate, it is what I heard from this conversation, which goes to my earlier point that what is actually said, matters. I only heard the tough love attitude until a lovely mom in the group spoke up and her comments are shared below.)

The  Balance is the Key answer (via the very wise mom who happens to be a reader and who was brave enough to speak up in the climate of tough love):  You might have to make adjustments to their schedule so they can do more, don’t necessarily assume you are being played. Shortening their school day can make it easier for them to do both the fun and not-so-fun. Be willing to look for solutions.  She and I spoke afterwards and agreed, that for these kids who are really ill, they deserve a chance to have fun and be normal sometimes. It is totally unrealistic to demand that they spend their limited energy solely on school. What kind of life is that? Again, balance is the key. Yes, kids – even sick ones – need limits, but that must be tempered with an understanding of the condition they are living with. As parents of EDS kids, we have just a few years to get up to speed with knowing everything we need to know about EDS so we can teach our children everything they need to know about it before they are grown and have to manage their condition on their own. It is our job to teach them to take care of themselves and when we tell them to just push through, we are doing them a grave disservice. Too many parents come to the EDS diagnosis with unhelpful, clueless attitudes that were passed on from their own childhoods. Often, they don’t fully understand how damaging those messages are to an ill child. They are not lazy, bad, attention seeking or crazy. They are ill and they need help managing this life long condition. Sometimes they need a kick in the butt and sometimes they need a hug. Balance is the key! (Tracy, if I misrepresented your thoughts, feel free to correct me!)

Another instance that comes to mind is Dr. Levy’s talk on ‘It’s Not in Your Head – Or is it?’  He said a number of times: Don’t let fear hold you back… And again, I mostly agree and yet I was a little confused because some of what he said sort of contradicted the typical advice we get. Is it joint protection at all costs or don’t let your fear hold you back. Or something in between?

The Don’t Let Fear Hold You Back approach: The gist of his talk was that pain is hugely impacted by your mind – which is a no brainer (no pun intended) for most of us. He spoke of not allowing fear of dislocating keep you from an activity. That you should not let fear hold you back from living life.

The Balance is the Key approach:  I know that reality gets a little skewed for the EDSer and they can dwell in an unhealthy fashion on pain and fear, but sometimes pain still is an important signal to be heeded and sometimes fear can protect us from doing something that could be harmful. Telling an EDSer to ignore pain and fear might be equally as harmful as encouraging them to wallow in pain and fear. I don’t think the answer is one or the other, rather, it is finding the correct  balance so you can live to the fullest extent possible. I do not think if you say, if I do that particular activity, I will most likely dislocate and it will hurt, that it means you are living in fear. That may be a practical assessment of reality that leads you to either making a different decision or tweaking the activity in such a way that you can safely do it. On the other hand, you don’t want to look at the world from your bed and say I can’t do anything. I happen to think that is a terribly rare attitude – the vast majority of EDSer want desperately to live to the fullest.  EDSers should be taught to listen to their bodies and analyze the risks and make wise, informed decisions so that they can live life fully.

It is true that fear is a real part of living with EDS. There are some very real things to be afraid of. So real, oftentimes, that it can be paralyzing. And, that we are sent such contradictory messages from our experts, is part of the problem. At the same conference, we heard both sides of various arguments. Have surgery, don’t have surgery. Avoid high impact activity, go ahead and play that sport which has injured you multiple times. Rest, push yourself. It was confusing and frustrating at times.

I finally have realized that part of the frustration I was feeling was that there is such a huge range of impact within the EDS population – and any given set of comments was being  broadcast to everyone, regardless of whether it was applicable or not. The barely impacted and the severely impacted got the same messages – with the mild to moderate folks getting the most advice. And those bits of advice just don’t always fit everyone. So, the discussions of POTS mattered a great deal to those disabled by it, but were rather meaningless to those who aren’t dealing with it. Discussions of which sports should kids play and under which limitations mattered a great deal to kids who are still well enough to play, but fell on deaf ears for those of us for whom playing sports is a distant dream. EDS treatment/ advice is never, ever one size fits all. And we all need to keep that in mind. The parent of the mildly affected child should cling to the knowledge that not all EDSers are functionally disabled. The parent of the severely affected child should cling to the knowledge that many do get better, particularly with the right treatment. But that is hard to do when you are hearing a one size fits all message and trying to figure out how it fits in your life. And, for those of us whose lives have been violently turned upside down by EDS, it was frustrating to feel that our very real concerns were not fully addressed and even minimized at times.

In part 2, since part 1 is already way, WAY too long, I want to talk about how a discussion of what we know about why some EDSers are so terribly ill would have been beneficial to have at the conference. And probably other stuff like how this balance is the key business is easier said than done, as well.

If you are with me this far, pat yourself on the back and congratulate yourself for plodding through! Do something nice for yourself because you deserve a reward! Part 2 is on the way…

The Key

Em’s Day at the Conference

If you are a regular reader, you know that I was pleasantly shocked when Em announced that she wanted to go to the conference with us, as I was making plans to go earlier in the summer. That announcement was slightly inconvenient because it required a quick change of plans, but I was also very pleased that she wanted to take this step. Up to that point, she wanted nothing to do with reaching out and meeting other EDS kids or actively learning about EDS. So, it was big when she said she wanted to go.

We knew she probably couldn’t do the entire weekend, but left that open as an option if she could when the time came. As the date came closer, we knew she would just be there for one day and looking at the kids schedule, we knew that day would be Friday. (Friday had the most activities scheduled versus the Saturday schedule.)  We also knew that even coming for just a day would be exhausting and painful and that she would pay for it for days. But, she felt it would be worth it – and in retrospect, it absolutely was.

She was pretty excited and was up at 8:30 Friday morning to take her meds and get dressed. She had decided she wanted to get to the convention by noon, so she could participate in the afternoon activities. That meant she and my parents needed to leave by 9:30.  While I attended a session, Andrew met them at the hotel, got my parents settled in our room for the day and brought Em over. We dropped her off in the room where the other kids were and went off to our own session. She had planned not to eat lunch with us – to bring a packed lunch and eat before she came in. But, she ended up eating with us and did ok – she ate ‘grilled’ chicken, a roll and some raspberries.

When she was done, she decided she would go by herself to find the lady who was working with the kids and ask her a question. So, as my jaw dropped during this uncharacteristic display of public confidence, she took herself off in her wheelchair and was soon back. Then, she said the kids activities were going to start in a few minutes and she needed to go back. I offered to push her, but she said she would just walk, pushing her chair in front of her – knowing if she needed to sit, she could. I regarded this as a minor miracle. She would never, ever do that in public. Only in a place where no one would think twice. That was my first clue that the day was truly going to be amazing!

While Andrew and I were doing our thing all afternoon, Em was with the kids. I checked on her at every break but she was clearly having a great time. She was hanging out with the other kids. She got to hear Dr. Pocinki speak and the kids were able to ask him questions about POTS. She got to sit in on a presentation about service dogs. She sold key chains and raffle tickets. And she got to have her thumb splints adjusted. By the end of the afternoon, she was clearly starting to wilt, but she was determined to stay for the pizza party.

We knew the pizza would be an issue, so I wasn’t really surprised when she called me when they started eating and asked me to bring the PB &J sandwich she had packed for lunch and some apple slices. We were in the middle of heading  into the hotel restaurant and ordering supper when she called, so I ended up eating a cold burger later, but it was worth it. I hung around to wait for her because I could tell by the look on her face that she was rapidly nearing the end of her rope. But, she refused to leave and I couldn’t blame her for wanting to savor every moment. In fact, she stayed until they all were ‘kicked out’ and she was kind of sad that she had to say goodbye, since she wasn’t going to be there the next day.

I think this was an incredible experience for her – to be in a room of people like her is really beyond words. She helped one boy put his shoulder back in when he couldn’t do it himself. When she was asked about her wheelchair, she started to explain that she has this thing called EDS, then realized she didn’t have to explain that and also understood that it was a genuine question that she could answer, not the usual ‘looky loo’ type question she gets. When Em loudly popped her neck to ease the pain, the girl next to her only said ‘oh, your neck does that too?’ She talked to a boy who has way more serious dietary limitations than she does, so it put her issues in perspective. Em even confessed that she was freaked out by the blatant hypermobility she saw everywhere, so I think she understands more of my perspective when I occasionally get nauseated witnessing some of her injuries.

She is definitely paying for the day she spent at the conference, although she isn’t as bad as I expected her to be. She spent most of Saturday and Sunday in bed. Definitely in more pain and her GI symptoms have flared up – when she is extremely fatigued and in high levels of pain, she just can’t eat. Sunday she was in a lot of pain in her shoulders, neck and head. Turns out pushing herself in the wheelchair was really rough on her and there are some lingering issues to deal with there. (This experience might be illuminating as we look in to her wheelchair situation – manual vs power. Still not an easy decision, but knowing how badly it hurt her to push, might help us decide.)

But, here we are a few days later, and she is settling down and doing ok. Still in increased pain but slowly recuperating. She feels it was definitely worth it and would do it all over again. In fact, she is hoping to go to the whole conference next year. She met some other kids, got their contact info and had a great time. I really could not have asked for more!



Conference Impressions

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.

Post Conference Ramblings

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.

Wow! Day 1 done

Been a long, wonderful, awesome day.

Highlights: Dr. Pocinki on sleep issues, Dr. Smith on mast cell disorders, and the EDNF announcing plans for a research registry and an EDS Center!!!! Watching my daughter hanging out with the zebra herd was pretty darn awesome too!

Met some great folks and put some names to faces. All in all, a wonderful day! Gotta get some sleep so we can do it again tomorrow.

2012 EDNF Learning Conference

I just found out last night that the conference is going to be in Cincinnati (across the river, but it is essentially the same thing). The last couple years the conference has been in Baltimore. While I would love a chance to go to Baltimore, it just wasn’t going to happen. We just have too many medical bills to be able to swing a vacation to Baltimore this summer.

However, Cincinnati is completely doable. A couple hours down the road – basically in my back yard. I can go by myself if necessary – not sure the rest of the family would even want to go with me, although I would like it if they would.

I have felt desperate to go to the conference but it just hasn’t worked out  – in 2010, I had just ‘diagnosed’ Em in May and the conference was in July, so there was no way I could go. This past summer, Em was way too sick for me to leave her or for her to go with me and there was no way we could afford it anyway. This coming year, I have a chance to go and this is truly an answer to a prayer.

Furthermore, the conference taking place in Cincinnati will (hopefully) bring attention to the work Dr. Tinkle is doing and help educate the doctors in this area about EDS. We could certainly do with some awareness around here – specifically at Cin Children’s. I have a few docs I would love to nominate to go and listen, but I guess it doesn’t work that way! 🙂

Anyway, I am very, very excited about the 2012 Conference and am looking forward to it. Hope to see you there!

EDNF Learning Conference                                                                                                                                                                                                                            Northern Kentucky Conference Center, Cincinnati, OH                                                                                                                                                                                                       August 9-11 2012

EDS Conference

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!

%d bloggers like this: