News Archive

Easier Done than Said...Living with a Broken Voice: New Book on Spasmodic Dysphonia

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Easier Done than Said...Living with a Broken Voice is a new book written by those who suffer from SD, and professionals who work with SD patients. It is a compendium of shared experiences from within the SD community.

This book is designed to:

• Provide comfort and guidance to those who are struggling to understand spasmodic dysphonia;

• Explain to family, friends, co-workers, and other interested parties the challenges faced by people with spasmodic dysphonia; and

• Bring spasmodic dysphonia to the general public’s attention.

For those who have been coping with SD for years, we hope this book will provide you with some new ideas to address current issues you might be facing. For those who are recently diagnosed or who are still seeking answers to this strange ailment, we hope this book will serve as a useful reference guide as you begin your journey through life with SD. For friends, family members, or co-workers of those with SD, we hope this book will help you to better understand the plight of people dealing with SD.

Author Karen Feeley has been living with SD since 1997 and has been an active member of the NSDA since 2001.


Emily Lim finds her Voice through Writing

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Congratulations to NSDA Member Emily Lim who recently published a new children's book entitled The Prince and Pauper Bear. Emily shared, "This story was inspired by my personal struggles of coping with Spasmodic Dysphonia for the past nine years."

The Prince Bear and Pauper Bear is the first story I have ever written. There are parts of me in the wo main characters. Prince Bear was me before I was stricken with the condition, while Pauper Bear resembles me after. Like me, Pauper Bear discovers goodness and kindness from different people and is given a second chance," she said.

Wanting to repay the support and kindness she has received, Emily decided to pay it forward. She has generously donated a limited quantity of her book to the NSDA with proceeds supporting the organization. Click here to order it.

Safety Issues Regarding Botulinum Toxin

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NSDA is aware of recent publicity generated by an FDA report and a subsequent petition from an organization called Public Citizen.

We have asked Andy Blitzer, M.D. on our NSDA Medical Advisory Board for his comments from a perspective of how this petition relates to the use of botulinum toxin as a treatment for spasmodic dysphonia. Here is what he had to say:

"The review referred to was done for all botulinum toxins (not just Botox). It was not started because of some new complications just recognized, nor a series of bad results.

The side effects and risk factors mentioned are consistent with the current U.S. labeling for BOTOX(R) and BOTOX(R) Cosmetic approved by the FDA.

Furthermore, as part of its effort to provide critical guidance to physicians and the public on the effects and use of drugs, the FDA recently completed a routine safety report on BOTOX(R) in which it reviewed serious adverse events reported to the FDA through the MedWatch system over the course of more than a decade of BOTOX(R) use, and non-serious adverse events over a year. The FDA's report reaffirmed the safety profile of BOTOX(R), noting that the majority of adverse events reviewed were included in the labeling for BOTOX(R) and BOTOX(R) Cosmetic. Of the few reported adverse events that are not included in the product labeling, none indicated a pattern suggesting a common causal relationship to BOTOX(R) and BOTOX(R) Cosmetic.

The FDA's report is consistent with information received by Allergan's own stringent post-marketing pharmacovigilance program and with our understanding of the safety profile of BOTOX(R) and BOTOX(R) Cosmetic as demonstrated in clinical trials involving more than 10,000 patients, and in clinical practice.

In addition, I think your members might want to know that this is now my 25th year of injecting all sorts of neurologic conditions with Botox (including SD). We have injected literally thousands of people with very few adverse events. This is a better safety profile than most of the other drugs that we commonly use. I hope this information helps your membership."

(From Dr Andrew Blitzer, MD, DDS
Professor of Clinical Otolaryngology
Columbia University
Director, NY Center for Voice and Swallowing Disorders

NSDA recommends that patients follow the usual practice of making a personal decision based on a discussion of their individual case and the related medical treatment with their own doctor.