Dystonia International Patient Registry for the DYT1 Gene

Hello tribeswomen and tribesmen,

If you have been tested positive for the DYT1 gene or have been told that that

is most likely the cause of your Dystonia, please go to the bottom of this

page and register. OR consider being tested for it if you think that you may have it.

Rick Staab of Tyler's Hope has spearheaded this registry and Anne Soeder

is key in furthering the usefulness of this much needed registry.

The U.S. Government will be helpful in all efforts to maintain this database.

It will help with research that will ideally, lead to better treatments and one day a cure.

Come on!

www.dipregistry.com

We have a big conference call in the morning to discuss all aspects of the registry.

Lastly, I will let everyone know the moment I am told that my TED speech has launched.

Love,

Rogers

PBS/McCuistion interview backstage post-TED speech

An interview for PBS post-TED speech.

http://www.frtv.org/2009/11/tedx-rogers-hartmann-frenemies-dystonia/

THE STONE

After an on and off day long email chat with a most excellent fellow Stone member,

I have decided to re-name our disorder.

It is now The Stone.

Firstly, I am a little tired of saying and writing the word: Dystonia.

Plus The Stone is a much cooler word and feels like a friendly, solid word to me.

I will practice the new word for it tonight at a wonderful event in

whatever city I am in.

My co-hort calls it that at times with a buddy of hers. After hearing that,

I thought, "Hmmmm, it sounds of course, less medical and antiseptic and a

tad Rock 'n Roll. Or a lot Rock 'n Roll."

So, I will give it a whirl and will see how it goes.

Wish me luck. None of the facts will change, but I will be more

delighted to explain what it is if I can call it The Stone and then tell them

the real name towards the end of the chat.

I can be the only one embracing mixing it up a little bit. Not to worry.

Defining Dystonia and why it is so important

Since this "story" about a cheerleader ran on a Fox affiliate about her "getting" Dystonia from the seasonal flu shot ran, it has been a battle worth fighting for those of us who want Dystonia to be better understood and treated better by doctors and insurance companies...

AND the general public.

Now we know that it is NOT DYSTONIA, as I have been saying, as well as others,

including specialists in the field.

My main issue is not only that I, personally, as someone with Dystonia (ST) felt frustrated that someone would go on television clearly before she had not been properly diagnosed. I waited to accept any media invitations until I was on the proper medication, had educated myself about what I have and thought about it extensively so I knew what my focus would be.

Due diligence is a responsibility.

INFORMATION IS POWER.

And after working so hard -- and my commitment to work hard for Dystonia forever, it is slightly maddening to see hackneyed press report misinformation about Dystonia.

If you even know what the affiliate news director said to me about it, you would be enraged.

"Why does it matter that we said it was Dystonia if we now know that it is not?" Well, I won that argument and he came around and could see how that would hurt our cause and search for healing.

He promised to do an extensive retraction story after finally listening to my viewpoint.

Why does it matter that she and they erroneously reported that she had Dystonia before she knew for sure?

Because it promotes misinformation about Dystonia and guess what that can lead to...

misdiagnosis, lack of diagnosis and more psychogenic diagnoses.

Do we want that? NO.

That is my opinion and that is why we should not give up on rectifying it in a big way. I am working on it, so we can slow down on the Facebook writing about it, if you like.

So, the three (or 4) main issues (again, in my opinion) are not doing due diligence before jumping at local TV invitations, terrible reporting by a handful of small stations and misinformation about Dystonia. Oh, and that another non-profit will not take down the misinformation about Dystonia.

I have much empathy for parents of children with Autism and for those with Autism, but I would never EVER use them to help a cause I am fighting for. It does not feel right in ANY way to me. Insensitive does not even come close to describing that situation. It would be so easy for them to take down their postings. If they had anyone in their families with Dystonia, I am sure those posts would have been taken down in a flash.

It feels like exploitation -- because it is. Scare tactics. Whatever you want to call it.

In closing, I am not even getting the two flu shots! :) I am not wild about vaccination, but some people need to do it based on quality press that I have read about it.

Woops, now, in closing -- I feel that this has been a healthy debate and one worth having.

It does not feel negative to me. It feels worthwhile and necessary when it comes to awareness.

As one fellow Dystonia friend said (and I had thought this, too), at the very least, we have a lot of people saying the word: "DYSTONIA"

That's something! But I want more.

(pic is of my speech at TED -- once it airs, it will help us a great deal)

NOT DYSTONIA -- as suspected.

Soon this story with so many inconsistencies will fade,

but awareness about Dystonia will not.

We HAVE un-rung the bell that Dystonia is in our heads (i.e. psychogenic).

I know people still face the psychogenic diagnosis and that must be rough

when one is in so much pain.

Luckily, the cheerleader was finally properly diagnosed after continuing to claim Dystonia.

So, as suspected she has something else going on.

My hope was that Generation Rescue (Jenny McCarthy) would have a productive

and positive chat with about all that was going on in the press -- they promised we would have

a call and then McCarthy bailed. They also continue to say that they have ZERO affiliation with the cheerleader, but the posting remains on their home page.

As with anyone who is suffering, I hope the cheerleader finds the right doctor.

That is key.

Onward and upward.

(Pic above is the newest Hartmann)

Generation Rescue is NOT keeping their word

I was 100% assured by GENERATION RESCUE employees that their new president

was going to call me today and that they had confirmed that with her.

I am now told that that is not happening. After the promises were made.

They stated that they are not affiliated with the cheerleader, but they are

keeping the posting up about her, still as if she has Dystonia.

I am reaching out in peace to them and they are not stepping up.

There are more things at stake than they may not even be aware of...

I wish I had better news about people taking responsibility for a huge

mistake that was made in the non-profit world.

It's too bad that they will not talk it through and figure out how to rectify

various facets of the issue.

I will say. I did expect more from Jenny McCarthy.

We are all fighting to discover underlying causes and ways to heal.

It's about doing what is right.

NBC AFFILIATE ON DYSTONIA MISINFORMATION

http://www.wcnc.com/video/news-index.html?nvid=411393

REPORT FROM NBC AFFILIATE in CHARLOTTE, NC

Article by the Director of General Neurology at Yale regarding the Redskins cheerleader who claims that she got Dystonia from the flu shot

Dystonia Case Follow Up

Published by Steven Novella under Neuroscience

In an interview for the SGU Christopher Hitchens told me that typically, after publishing a story, only then do people contact him that he should have spoken to in the first place. My humble blog has nothing of the reach of Hitchens’ writing, but it is still occasionally the case that after posting a blog I am contacted by people I really wish I had spoken to before I finished writing it.

For example, on Friday I discussed the case of Desiree Jennings, the 25 year old woman who claims to have developed dystonia 10 days after receiving the seasonal flu vaccine. I reported that all of the neurological experts who viewed the videos of Jennings that were made public (including me) are of the opinion that she does not have dystonia. Rather, the signs she displays are more typical of a psychogenic movement disorder, and therefore not due to the vaccine.

There is another angle to this story, however, that I was not aware of. I was mostly interested in the vaccine angle, as the Jennings story has been exploited by the anti-vaccine movement to further scare-monger about the flu vaccine. There is also a dystonia community, and they were not happy about the Jennings affair either. In particular, a woman by the name ofRogers Hartmann, who suffers from dystonia, and who has been one of the main faces of dystonia activism to the media, contacted me.

The dystonia community is concerned that the fact that neurology experts are forced to go on public record that Desiree Jennings’ symptoms are more consistent with a psychogenic disorder rather than a true neurological disorder may generate confusion in the public about the nature of dystonia itself. Fair enough – although I thought the doctors who were interviewed on Fox were pretty clear. I will also add here that dystonia is a perfectly legitimate movement disorder. It is, in fact, a brain disorder that results in involuntary muscle contractions. It can be very debilitating. The Desiree Jennings case should not confuse anyone about the nature of true dystonia.

But there is more still. Generation Rescue, the anti-vaccine group started by J.B. Handley and now fronted by Jenny McCarthy, was quick to jump on this case as a legitimate vaccine injury. But they then quickly distanced themselves from the case, removing the web page they had set up for Jennings. Here’s why.

The story appears to have been broken by the Loundountimes.com. Reporter Nicholas Graham discloses the Jennings is a colleague of his, and undoubtedly that is how he heard of her story. The story was then picked up by a Fox affiliate in DC, reported by Claudia Coffey. From there it was picked up nationally by Fox News and Inside Edition.

Generation Rescue president, Stan Kurtz, apparently saw the Jennings story as an opportunity to get some free press for their anti-vaccine nonsense. They “reached out” to Jennings. Here is what Kurtz had to say in an interview with Coffey.

“And the story is, anyone that sees– it is just so compelling, Jenny was crying over it,” says Kurtz.

Kurtz also believes with the proper treatment, some of her symptoms may be reversible.

“Well, unfortunately we happen to be very good at handling vaccine injury. We’ve got a lot of doctors that have experience in doing that, so our doctors and our resources are completely available to her, and we’re going do everything we can to give her a lot of options to, to help take care to help recover from this condition as best we can,” says Kurtz.

Poor Jenny was in tears, and Kurtz was ready to help by unleashing anti-vax quackery to treat Jennings.

But then Kurtz and Generation Rescue ran into a real patient advocacy group – Rogers Hartmann and dystonia activism. Hartmann runs an independent dystonia charity, lifewithdystonia.com. It was clear to Hartmann (as it was to anyone sufficiently familiar with dystonia) that Jennings did not have dystonia. She called Fox and Stan Kurtz – and then the furious backpedaling began. Until then Coffey had accepted the story at face value, without any journalistic due diligence in evidence. When she learned that perhaps she had been snookered, the panicked calls to Hartmann began.

It was not until after Hartmann became involved, and the e-mails and phone calls of many other dystonia activists putting pressure on Fox, did they do follow up reporting, such as interviewing Dr. Stephen Grill about dystoniaand the fact that Jennings does not have it.

It was also due to Hartmann that Generation Rescue was (partially) saved from its own stupidity and zealotry. Stan Kurtz was going full-steam ahead, as if Generation Rescue had the expertise to diagnose and treat vaccine-induced dystonia (an entity never reported in the medical literature). And then (after being contacted by Hartmann and having the truth of the matter explained to them) suddenly and without a word, Generation Rescue backed away from Jennings and took down the web page.

I wonder if they will be as interested in helping Jennings now that they cannot exploit her case to fear monger about vaccines.

Curiously, the Age of Autism blog (never ones to let the facts get in the way) is still treating the case as a legitimate story of vaccine injury. Although they are being a bit cagey. They are just printing a letter from Jennings, with a preamble dismissing expert opinion that her disorder is psychogenic. They do this by explaining the etymology of the word “hysteria”, which is not exactly a synonym for psychogenic (in fact “hysteria” is no longer used because of its connotation). I guess they deny all psychogenic illness, even though it is very well described in the neurological literature.

I have personally seen cases that were proven to be psychogenic. These are not just cases where we cannot find a neurological cause – it is not a guess or a last resort. There are cases in which the neurological signs and symptoms on display are anatomically impossible – where a psychogenic cause is the only plausible explanation. And it is treated as a real and serious disorder – just a psychological disorder, rather than a neurological one. Ironically, AoA is trying to imply that neurologists who invoke the psychogenic diagnosis are being insensitive, but in reality they are basing their implications on a premise that is itself insensitive – a rather unsophisticated and harmful denial of psychological illness.

So far, AoA is still running with the story, writing in follow up about how Jenny McCarthy and Jim Carey were so kind to reach out to Jennings. I guess they didn’t get the memo from their sponsor, Generation Rescue, to back off.

This is an unfortunate story, and I wish Desiree Jennings the best. I hope she finds her way to a competent clinician and does not get caught in the maelstrom of quackery that is sure to follow her.

But this is not a story of a woman injured by a vaccine. This is not even a rare vaccine reaction. It is something else. Neurological experts know it, and the dystonia community knows it.

This is also a story of irresponsible journalism. As Hartmann pointed out to me – most national media outlets did not touch this story, because even basic journalism would have uncovered that there is something fishy here, and no good journalist wants to get caught with their pants down. This is also a story of how irresponsible the anti-vaccine movement is. They were quick to exploit this case for its emotional appeal, pretending to have expertise they lack, and got it completely wrong. That’s a good summary of the anti-vaccine movement as a whole.

A simple thought for our tribe

This is a very simple thought that I have had for the past week or so.

Simple, but hopeful.

With how wacky Dystonia is, we all have our ups and downs. We have to live day by day. And even without Dystonia, we should be doing that anyway. (It's a practice and trust me, I am not saying that I am great at it everyday.)

Anyway, the simple thought...

If I am capable of having some improvement,

I am capable of even more improvement,

and beyond that, EVEN MORE improvement.

SIMPLE, BUT TRUE. It must be. If one can stop getting worse, then I think the sky is the limit when it comes to feeling better. In many ways.

Everyone's "better" may be different, but I will take it!

Happy November 1st with the extra hour of sleep.

(Pic is of me, Mom and Louis being interviewed by NBC)