The Problem With Ehler’s Danlos National Foundation (EDNF)

I usually talk and write about POTS and Dysautonomia. Like many people with POTS I also have hEDS (Ehler’s Danlos). The Ehler’s Danlos National Foundation (EDNF) had a conference this weekend. One doctor, Dr. Lavallee, managed to outrage most of the EDS community with just one slide.

justdoit

Dr. Lavallee put up this slide. If you cannot read it says:

“Just Do It!
Do not feel sorry for yourself
or I will introduce you to:
-US Veteran
-baby with retinoblastoma
GET OFF YOUR NARCOTICS”

Understandably people are upset. I have talked about it before and I will say it again. Stop comparing illnesses. Stop comparing pain! It is even worse coming from a doctor. In telling you he will introduce you to someone with it worse he invalidates your suffering. I also have no idea why being introduced to a US Veteran would make me “stop feeling sorry for myself.” My partner is a veteran and I think he would agree with me that EDS sucks. Ehler’s Danlos isn’t a joke and should be taken seriously. Plenty of Ehler’s Danlos patients have ended their life to get away from the pain, which brings me to Dr. Lavallee’s second point.

I understand wanting to avoid narcotics when you can, but sometimes they are the only thing keeping some of us alive. There comes a time in a lot of painful chronic conditions where you cannot and don’t want to live in that much pain. At that point isn’t it better to give patients narcotics so their quality of life is decent enough to not want tot kill themselves? I’ve heard a lot of stories of people at this crossroads. After a certain point of being in that much pain everyday narcotics ae the only alternative to suicide. Dr. Lavallee making a blanket statement of stopping all narcotics is just ignorant.

After this, and a lot of outrage, the EDNF posted this:

“I am not even home yet. I’m still in a hotel room, watching outrage unfold at Dr. Lavallee’s presentation of less than 24 hours ago, while now trying to form a response on a cell phone.

Conference materials include: “The presentations and materials remain the intellectual property of the presenters, and all rights are reserved to them. EDNF does
not control and is not responsible for the content of presentations.”

This is for two reasons. EDS knowledge changes quickly and views on treatment are radically different. EDSers are not best served, in my view, by having their access to these differing perspectives restricted to a narrow window of what is accepted this year, but by seeing the wide range of approaches and deciding which are valid for themselves. We are very different zebras. We are not all the same. What works for one may not, perhaps will not, work for another.

Second, speakers volunteer: time, thoughts, expenses. They come to talk to us because they want to, not because they’re paid to or told what to talk about or how to think.

Last in all this, I’d ask you to remember you are ripping apart a fellow EDSer, and one who helped EDNF survive and thrive. Dr. Lavallee has EDS, what he talks about he talks about from experience, both his own personal experience and that of his many EDS patients over decades. His perspectives may infuriate you, but they work for him and those he treats. Are those EDS experiences simply wrong because they’re not the way some of us manage our own EDS? Are some with EDS better than others? We’re a large, complex community and we’re never going to agree completely on how we each cope with having our own particular version of EDS.

Anyway: I am about to be gone on travel to get home, so I ask you please to be a little easier on us until we are all back to
our loved ones and can actually think. We can discuss this more over coming days; nothing that happened will be changed, and while outrage is fast, careful thought is not. It hasn’t been a full day yet since conference ended and typing on my phone is not easy on my EDS (and aging) fingers. Thanks for your patience.”

The EDNF should screen what is in presentations and presenters. The whole “intellectual property” excuse sounds like them trying to distance themselves and take away blame pointed their direction. It was still their conference; they are supposed to be helping those with EDS and supporting us. Instead they let it another doctor to tell us it is in our heads and we are being hyperbolic. Haven’t we had enough of that? Wasn’t the EDNF formed so we could raise awareness and education about EDS and stop this very thing from happening? If we can’t even get our own experts to show an ounce of compassion what hope do we have for the rest of the medical community and even society in general?

The EDNF points out that Dr. Lavallee is a volunteer and volunteered his time, energy, expertise. Well he ended up hurting this community more than he helped. That is like volunteering at an animal hospital to kick puppies, but we will let him kick puppies because volunteered, right?

This part is even more infuriating. Dr. Lavallee has EDS?! Yes, he has EDS and still can’t muster any sort of compassion or empathy for other’s with EDS?! I don’t understand why him having EDS means that we can’t disagree with his methods or dislike him. Knowing he has EDS basically just confirms my thought that he isn’t the greatest human being.

The EDNF talks like Dr. Lavallee just suggested a controversial treatment. No, he compared illnesses in an unhealthy, unprofessional, and unacceptable matter. He implied that we all “feel sorry for ourselves” which is not true. EDS sucks but the community doesn’t throw many pity parties. I see a community full of strong people doing the best they can through a really difficult illness.

In addition, the EDNF claims that his perspectives work for him and those he treats. After reading comments about Dr. Lavallee, I don’t think it sounds like he is so terrible one on one, but I suspect he just doesn’t make his backwards views known. The reviews are mixed but no one mentions him comparing illnesses or being a jerk. I hope he doesn’t say these things to people on an individual basis. Maybe we are now seeing his true colors? One patient in their review said that Dr. Lavallee claimed he could make her symptoms basically go away through exercise. A lot of us have tried exercise but it isn’t a cure-all for most. So no, EDNF Dr. Lavallee’s “perspective” doesn’t always work for his patients.

The EDNF’s mission statement states that “Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder, Ehlers-Danlos syndrome…[by]┬áProviding a network of support and communication.” Well the only support I see from the EDNF on this issue is of Dr. Lavallee.

Dr. Lavallee is a large supporter of the EDNF and has been involved with them for a very long time. I suspect this is part of the reason they sided with Dr. Lavallee rather than supporting us like they should be. It is just disgusting.

hookers

(I’m not actually going to make my own EDNF with blackjack and hookers)