February 2010 Support Group Meeting

Saturday February 13, 2010 at CJW Hospital

Time: 12:00 to 3:00 PM

 Support Group News:  Our own Mari Hayashi to speak at February meeting.

Looking forward to seeing everyone at our next meeting on February 13th.

Dystonia Coalition Moving Forward

Funding from the National Institutes of Health for a five year clinical research grant award aimed at forming a multicenter Dystonia Coalition to advance clinical research on primary focal dystonias, including cervical dystonia, spasmodic dysphonia, blepharospasm, and others has begun. Leading the Coalition will be H. A. Jinnah, M.D., Ph.D., Professor of Neurology and Human Genetics at Emory University in Atlanta, GA.

The $6.2 million award will allow the Dystonia Coalition to cultivate a better understanding of the primary focal dystonias and find better therapies. This includes projects to develop a better understanding of their natural history, establish instruments appropriate for monitoring disease severity in clinical trials, and develop proper diagnostic criteria. The creation of a biorepository to store biological samples to support future research is also planned, making these resources available to investigators worldwide. The Coalition will bring together the most committed dystonia researchers in North America and Europe, along with dystonia patient advocacy groups.

One component of this grant is aimed at developing an accurate diagnostic test for identifying patients with spasmodic dysphonia who do not have other voice disorders. This was identified as the highest priority need when a research planning conference co-sponsored by the NSDA was held at the NIH in June 2005. The study will take place over five years and has three parts. In the first, the diagnostic test will be evaluated at four voice centers (Washington University at St Louis; Medical College of Wisconsin in Milwaukee; New York Center for Voice and Swallowing Disorders associated with Columbia University, and Emory University in Atlanta) to determine whether otolaryngologists, speech pathologists and neurologists at each center can use it accurately and reliably for determining which patients have spasmodic dysphonia and which patients have other voice disorders such as psychogenic dysphonia, muscular tension dysphonia or vocal fold paresis. 

In the second phase it will be determined if medical professionals not specializing in voice can also use it to accurately and reliably diagnose spasmodic dysphonia. In the final phase, a double blind treatment study will determine if this new test can accurately quantify changes in severity of the disorder for conducting clinical trials in spasmodic dysphonia. If successful this study will provide a new instrument to serve as a basis for increasing research on spasmodic dysphonia, as we will then be able to identify persons with spasmodic dysphonia and determine the severity of their voice disorder.

"This funding will allow us to develop the first test for accurately identifying who has spasmodic dysphonia and will allow us to measure treatment effects. This will provide the base from which to increase research attention to further understanding and improved treatment for spasmodic dysphonia," says Christy Ludlow, Ph.D., Scientific Director of the National Spasmodic Dysphonia Association. The NSDA is proud to be part of the research coalition and hopes it will bring a greater interest to this field of research.

Thank you for your continued support of the NSDA!

National Spasmodic Dysphonia Association

300 Park Boulevard, Suite 301, Itasca, IL 60143

FOX News Story By CLAUDIA COFFEY

A Washington Redskins cheerleader was left disabled by a flu shot. She could barely walk or talk, and her condition was getting worse.

Suffering dozens of seizures a day and her life clearly in danger, she sought the help of a controversial doctor in North Carolina. Desiree Jennings sat down with FOX 5's Claudia Coffey outside of Charlotte to give us an exclusive look at her road to recovery.

Desiree Jennings was told by some doctors that she would never recover that the damage she suffered from a flu shot was irreversible. But over the last month, she has gone from being on deaths door to seeing that her old life is just within reach

Jennings, 25, never lost hope that this day would finally come.

"It feels great to be able to smile again," says Jennings.

The Ashburn, Virginia native is not only able to smile, but she can walk again. These simple steps seemed impossible nearly a month ago when we first introduced you to the Redskins Cheerleader Ambassador.

Just days after getting the seasonal flu shot, her health spiraled out of control. She had difficulties walking, talking and suffered several seizures a day.

Johns Hopkins and Fairfax Inova diagnosed her with a rare reaction to the flu shot that resulted in dystonia, a rare neurological disorder. But she still had some control. For instance, she could run but not walk forward. She even ran in a 8K race. But days after she crossed the finish line, her health took a turn for worse.

"I did not know what was in her-- all I knew is that what was in her shouldn't be in her," says Dr Rashid Buttar.

Actress Jenny McCarthy's Foundation called Generation Rescue, which educates people about ways to reverse autism and concerns over vaccine safety, put Desiree in touch with Dr. Rashid Buttar, who practices outside of Charlotte, North Carolina. He's a controversial physician who practices preventative medicine.

When Desiree arrived there more than three weeks ago, she was in acute respiratory distress. She could barely breathe, and there were concerns she just wouldn't make it.

"Her face was starting to get that purplish bluish tint because she couldn't get air. Twice I looked at my head nurse like we may need to call EMS," says Dr Buttar.

But 24-48 hours later, Desiree was stable. And when we paid her a visit, she was walking and laughing, and was seemingly on the road to recovery.

"Overall I think my spirits are higher. I definitely feel light-- I have a positive future. Hopefully all of this will get better," says Jennings.

She's no longer having any seizures. She can speak perfectly normal whenever talking about the past or the future but her voice changes whenever she speaks about the time period when she was sick which began in early September.

Dr. Buttar describes it as a hard drive damaged on a computer, but that too, he says, will return. Desiree is amazed at the improvement, but she admits at one point, she thought she was going to die.

"I also knew my health was getting very bad, and I didn't have much time, so I said this has got to work-- I have nothing left," says Jennings.

Dr. Buttar diagnosed Desiree with essentially a toxic reaction to the flu shot.

"My diagnosis of her is acute viral post immunization ensephalophosphy and secondary mecury toxicity, which we just established as of this Friday.

When asked if her diagnosis was a result of the flu shot, Dr. Buttar responded, "Absolutely. Without a doubt? Without a doubt."

He says she was showing symptoms from a number of different conditions including dystonic side effects, which is why he says so many doctors couldn't figure out what was wrong with her. Desiree's private neurologist also diagnosed her with a dystonic reaction to the seasonal flu shot. Dr. Buttar treated her in what many traditional doctors might call an untraditional way.

"We took the toxins out of her system, we supported her system, we reduced inflammation and we started treating the injuries by giving her certain nutrients that the brain needed to help repair the neuroreceptors," says Buttar.

Those treatments included, among other things, time in a hyperbaric chamber and dozens of IV treatments containing synthetic amino acids and nutrients. Dr. Buttar believes with rest and continued treatment, Desiree will fully recover.

Desiree has received attention and support from across the world since we first brought you her story, but with that has come naysayers many who say this was an act.

"How can you say its a hoax when you haven't spoke to me and haven't actually examined me and haven't seen the pain and suffering I have gone through? But why would anyone want to create a hoax like that?" says Jennings.

Now she feels a calling to do more once she's better. She wants to educate others about informed consent and encourage people to be educated about the side effects of vaccines.

Since 1999, the North Carolina Medical Board has made multiple unsuccessful attempts to restrict Dr. Buttar's license, most recently in 2007 when complaints by four people -- family members of former patients-- were brought forward. A new hearing is scheduled at the end of February. The board is seeking again to restrict his license as well as charge him with unprofessional conduct.

CORE GROUP MEMBERS

Coordinator: Carol Wines

                        Phone:               (804) 746-2321         (804) 746-2321

                        e-Mail: carolw2006@comcast.net

Co-coordinator: Joyce Gumm

                        Phone:               (804) 639-6778         (804) 639-6778

                        e-Mail: JamesWGumm@aol.com

Treasurer:      Jim Gumm

                        Phone:               (804) 639-6778         (804) 639-6778

                        e-Mail: JamesWGumm@aol.com

Newsletter:     Ted Pytlik     

                        Phone:               (804) 379-7230         (804) 379-7230

                        e-Mail: ted.a.pytlik@usa.dupont.com

Dystonia Coordinator: RJ Bernard

                        Phone:               (757) 724-5266         (757) 724-5266

                        e-Mail: RJ.BernardIII@penske.com