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.


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

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] Providing 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.


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

9 thoughts on “The Problem With Ehler’s Danlos National Foundation (EDNF)

  1. wow! i can’t believe a doctor would say that! it doesn’t matter whether he also has EDS, it’s still an incredibly sensitive thing to say to a room full of people who also have it. it will be interesting to see how the EDNF responds!

    1. I was outraged when I saw the slide but I confess that I would be prepared to stand in a bucket of worms if it made the pain go away. When my EDS was first diagnosed, I was much more mobile than I am now and I had a job and a small child to look after. The shock of the diagnosis brought on fibromyalgia too. I spent several months ‘feeling sorry for myself’ and sleeping a lot. Eventually, when the summer came, in fact, my energy levels increased and the fibromyalgia eased for a while. I did actually tell myself ‘get on with it’ ‘stop feeling sorry for yourself’ etc. I struggled on with work but I really did struggle. I started cutting my hours so that I could use my energy for my daughter. My Mum got cancer and I decided she was worse off than me. The worry for my Mum’s health exasperated the fibromyalgia for a wee while but then my Mum needed someone to look after her when she had a kidney removed. I somehow managed to step up and go and nurse her. There have been a few times that I have had to muster energy, strength, determination and mind over matter. I moved 160 in order to be in Professor Ferrell’s catchment area. I thought that seeing him and the physiotherapist he sent me to would be a ‘cure all’ solution for me. Sadly, I am very sensitive to stress and the physical activity involved in moving house wore me out to the extent that I couldn’t do the smallest of exercise. I ‘pulled myself together’ and supported my Mum when she lost my step father to cancer very suddenly, three years ago. Since then I have deteriorated rapidly. I don’t think I ever got over the house move. I am in too much pain for exercise and whilst I don’t take narcotics, I do take the strongest of painkillers which don’t cure the pain like they used to but simply ease it for a while. I can’t walk any distance any more because my hips dislocate so often that it’s not safe for me to do so. I’m basically housebound and waiting to be rehoused in a wheelchair adapted place which could take years. So, I have experienced the deterioration of my health since my diagnosis in 2000 and can understand all the objections and outcry about Dr Lavellee’s contribution but I can also agree that his methods really are worth trying in the early stages of EDS. I now admire people who work for a living, envy people who can go for a walk or dance. I do empathise with others, such as ill babies and veterans but I will agree that you can’t compare the effects of a disability or health condition. Basically, to put it bluntly, if a baby has cancer, it doesn’t ease my pain and meeting a veteran amputee won’t make me able to walk again.

      In conclusion, I don’t support the boycott but I genuinely sympathise with those who were really upset by Dr Lavellee’s opinions during his lecture. Sometimes freedom of speech can be hurtful, resurrect thoughts from so many doctors saying you’re imagining it and annoy you because you disagree. Don’t waste too much of your precious energy on being too affected by what boils down to one person’s opinion. Thank you for reading.

  2. I support your point of view, but I cannot sign that petition because of the way it’s worded and its unclear demands. The petition sounds overly emotional, in my opinion, and hurts our case and credibility more than it helps. I’d be happy to support the cause in general, but please read the last paragraph: “Sign this petition to get Ehlers-Danlos known. Sign to get this doctor out of EDNF. Sign this petition so that EDNF understands that for as long as there are doctors working in that facility that no one will go there. Sign this petition for your rights of being disabled. Sign this petition to see that this isn’t fair. That he is assuming that we are ALL on narcotics.” If we want to influence doctors and other educated people, we need to express ourselves as educated people. Moreover, “as long are there are doctors there” makes no sense. EDS is clearly already known to EDNF, so that part also makes no sense. The part about “this isn’t fair” sound adolescent at best. As for rights as a disabled person, I will state that I don’t consider myself disabled, but there’s no “right” violated here. None of us has a “right” to select presenters for EDNF, but we do have the opportunity to make our wishes known. Certainly having a petition to ask the Dr Lavellee no longer be included as a speaker is warranted. This, however, feeds into the myth that we are crazy people.

    1. I don’t disagree with you about the petition. I think there is probably a better way to approach this; I just want the EDNF and Dr. Lavallee to acknowledge that it wasn’t okay.

  3. I agree with you on this. After all the decades it took to get diagnosed, and all the horror I was put through because of this type of doctor…! I lost years of my life, and years of being able to get the right type of treatment, bracing and therapy. Men with an M.D. who belittle women, call them crazy, and let them needlessly suffer until their bodies start falling apart deserve no respect. If EDNF will support this type of treatment for those of us they claim to represent, I can’t be a part of their group either.

  4. Sorry, but I don’t agree with you. It seems the people most upset about this were not at the conference and did not hear the lecture.

    As someone else pointed out, the slide you mention was one minute out of a 45 minute talk. What has been overlooked is that Dr. Lavallee supports daily exercise, but that simply means moving your body–not calisthenics or running races or weight training. A stroll around the block, a Tai Chi class, and simply walking in a warm water pool are all examples of things EDSers can do without pain.

    Besides the cardio benefits, gentle exercise can strength the muscles, tendons, and ligaments to help us with daily living. That strength is what helps us hold our bodies together when they want to subluxat or dislocate.

  5. It goes without saying that there is still disagreement within this specific field of what we can and can’t do. If you are like me, and have other diseases and disorders on top of EDS, then you know full well that the scope of what one individual can and can’t do changes daily. Each and everyone of us is different with our own unique physiology and pathology. One question that i have not seen asked or answered is….. what, if any connection to the CDC or FDA does Dr. Lavallee have or represent?

    It’s great that he can rise above others and not have to use pain medications daily. Those vets are killing themselves at a phenomenal rate daily – we lose several everyday to suicide b/c their medical needs are not being met. I am giving him the benefit of the doubt here. However, given the ties that many Dr.’s can have with the FDA and CDC it is quite possible that he felt forced to respond the way he did for fear of funding cuts. Patients should be considered on a case by case basis.

    The myths and war in the media on pain medications has to be condemned for the basic lies that are being told. No one has really delved into the fact that people who have abused narcotic meds also have heroine and synthetic drugs in their system. I have been on the same dose of narcotic medication for 6 years. Yes, sometimes it seems like it’s not working and that’s when i know that i need to stop walking or get off my feet, etc…. but i could not function without the medication and i have had to prove this over and over and over again by going off of it to prove i am not getting rebound headaches, etc….

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