Contacting Oprah, with a link

Most of you probably received the contact OPRAH mass emailing (below), which was sent out in collaboration with the National Spasmodic Dysphonia and Dystonia Medical Research Foundation. We hope you will send an email from her web page to have a program on spasmodic dysphonia and dystonia.

Some of you said you had trouble with the email address given in the mass mailing letter. Hope you can click on the site below or use the web page address in your browser. On her web page you can fill in the form and write as much as you want under -suggestions for show. Then click - send - and it will go from there.

Oprah.com | E-Mail

Below is also the same page if the above does not work, copy or type this in your browser:

http://www.oprah.com/email/reach/email_reach_suggest.html

Below is part of the mass mailling email letter that was sent out:
Hi Dystonia Friends,

On a recent show, Oprah mentioned Botox, alluding to people using it for wrinkles. We felt it was an opportune time for patients to follow up and ask Oprah for a segment to inform people of the broader uses of Botox!

I checked with Valerie Levitan (director of the NSDA/DMRF) and she said:

"Why don't you go ahead and try. We haven't succeeded yet - but keep trying. Let people with all forms of dystonia tell how much Botox has helped... each person has a compelling story.....

The latest professional advice we were given is to present 5 scenarios of scripts, which we will do before the end of the year....My understanding is that Oprah receives approximately 5000 letters EACH day...."

Below is the letter I sent with a copy of our book, Speechless, and the video: What is spasmodic dysphonia. Thanks for your time and effort. Dot Sowerby

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Dear Oprah,

On your show, Sept. 13, 2000, Gary Zukav was talking about covering up things and emotions in ones life. You commented "I know, - people are BOTOXING themselves to death." You obviously were referring to botoxing wrinkles, but I wonder if you and your audience are aware of the wider medical benefits of this drug. Botox has helped restore my voice and the voice of others like me who suffer from a devastating neurological voice disorder called spasmodic dysphonia (SD) which is a form of dystonia. I talk in a strained, strangled, quivering voice but when I receive Botox injections in the vocal muscles, I am able to talk more normally, at least for a few months.

You are so good about helping educate people. Would you please consider
doing a segment on your show to advance the understanding of this voice
malady that affects 50,000 people in North America alone? There are still many more people who remain undiagnosed.

We have written a book telling the story of what it is like to live with this effortful voice condition and it is published by our National Spasmodic Dysphonia Association in Chicago. Below is a blurb about the book and also information on how to contact our National support agency:

Speechless, Living with Spasmodic Dysphonia
Published by the National Spasmodic Dysphonia Association
by Dot Sowerby, Jean Newcomer, and Betty Schonauer

"Speechless: Living with Spasmodic Dysphonia" is the biography of NSDA Board Members Dot Sowerby's experience with SD as told to Betty Schonauer. Also featured in the publication are I Climb Over My Voice by Jean Newcomer and An SD's Experience with Depression by French O'Shields, D.Min. as well as articles by Michael Rolnick, Ph.D. of William Beaumont Hospital in Michigan and Michael Rontal, M.D. of Associates in Otolaryngology also in Michigan.

Valerie F. Levitan, Ph. D, Executive Director,
National Spasmodic Dysphonia Association,
One East Wacker Drive, Suite 2430, Chicago, IL 60601-1905
phone 800-795-6732, fax 312-803-0138.
Email: VFL@dystonia-foundation.org

Yours in Rare Voice!

Thanks for this additional information. I will write and my letter will be powerful. Oprah needs to be accountable for that flippant statement. I don't care if she gets a million letters each day. This is an opportunity for us to educate her and others as to their insensitivity.

As I told you when we met in November last year at the ASHA Convention in San Francisco, I had responded to a newspaper article in my SF Bay Area community entitled, "Botox - A Treatment That is Finding New Uses." I gave you a copy of that article and my response. The original article was written by a local doctor who writes a weekly column for my local paper. I took exception to his emphasis. To quote him last October, "For years now, Botox has been a successful treatment for torticollis, a twisting and painful condition of neck muscle spasms...More recently, the cosmetic doctors have gotten a hold of Botox to try and erase facial expression wrinkles..." There was some further mention in the article of Botox for blepharospasm ("used for eye muscles") with no naming of the disorder. He never mentioned use of Botox to address Spasmodic Dysphonia or any vocal issues.

Well...as you know, I don't sit around when I read something like this. I immediately responded with a long letter to him and the newspaper addressing many more important uses of Botox than for wrinkles, including for SD. The following week, the paper gave me a half-page with the headline, "First-Hand Information on Diseases Botox Battles" (off of the wrinkle-subject at that point...hoorahhh!!!).

I notified him of Dystonia Awareness Week and emphasized that many people need Botox to *live,* rather than to just address their facial signs of aging. He acknowledged me and introduced my article to all the readers by saying, "I often learn a great deal from patients. All physicians should. I also learn from readers of my column as this recent letter shows."

As a result, I had people calling me in gratitude who had never had their dystonias and their Botox experiences acknowledged in the newspaper. People who had felt completely alone. I made new friends because of that article. Also, I learned more about Botox than I had ever known before. Never having had Botox myself (surgical patient), my knowledge was second-hand. I found out (from challenging the local doctor publicly and meeting people who really needed Botox to function) things about the "Botox-supply" that I didn't know ~ that the "wrinkle-people" who are usually WAY more well-to-do than people with ST and SD, etc. who need Botox to live are inordinately consuming a limited supply of Botox and often severely affect the health of dystonia patients. The "wrinkle-people" can afford it so they are *sucking up* the limited supply which should be available to those who can't readily afford it.

You bet I'll write Oprah. How would she feel if she needed Botox for her survival (as opposed to her "smile-lines")...and was not a multi-millionaire!!! How would anyone feel who had SD or ST or Bleph or anything requiring Botox to survive when "Hollywood" is sucking up the limited supply to look younger. Just the thought makes me sick.

--Lynne