Dystonia Awareness
This portion of our website is dedicated to awareness of and publicity for dystonia. Publicity is not easy to garner for a poorly recognized neurological disorder. We first have to begin with redefining dystonia in clear understandable terms that will be understood by the general public and the media venue. The current definition for dystonia is complex: Dystonia is a neurological disorder characterized by involuntary muscle contractions which force certain parts of the body into abnormal, sometimes painful postures or movements.
Any reader unfamiliar with the disorder will question and ask themselves “What does this definition really mean? Does it earn interest in the disorder and its cause? ”
Towards that end, we have redefined dystonia as follows:
A brain disorder set apart from other disorders of the brain by the resulting over-activity of voluntary muscles. This resulting activity can occur in individual muscles, muscle groups such as a limb, facial area, arm or vocal cords, or the entire body. It is the over-activity of these specific muscles that may cause:
- Uncontrolled movements and/or tremors
- Persistent or episodic muscle tightening and/or spasms
- Strange body poses associated with constant or intermittent pain.
Copyright © C4D 2006-2008.
Once we have clarified the definition of dystonia, we must take into account the number or epidemiology of the disorder: How many people truly have the disorder? How many have symptoms resembling the disorder? In whom is the disorder most prevalent? What are risk factors for developing the disorder?
Unfortunately for years, this same value — “that 300,000 people in North America have dystonia” — has been sold to the media, when in fact the incidence or number of people who have the disorder actually is higher considering that the disorder co-exists with other disorders. This includes Parkinson’s Disease (more than 1.5 million people in the US), Wilson’s disease (over 30,000 people are affected worldwide), cerebral palsy (which can be misdiagnosed as a form of dystonia called Dopamine-responsive dystonia), Huntingtons’ disease and multiple other neurological diseases.
In conclusion, we can summarize that dystonia is more common than one thinks, or than what is being portrayed today by all the Dystonia foundations. Solving these clues can be accomplished by conducting thorough epidemiological studies. Such data, then, can be presented to the media, along with human interest stories about the disorder, to gain the needed publicity and awareness that so many affected by the disorder desire today.
Care4Dystonia has been instrumental in obtaining media attention and publicity in the media beginning in the 1998 NBC Dateline segment “A Pain in the Neck” and most recently on the Oprah and Friends XM Satellite 156 with Dr. Mehmet Oz, MD. in 2008.
Thomas Jefferson suggested that “The most valuable of all talents is that of never using two words when one will do” and this is a good maxim for writing good public awareness materials and tools.
Links:
Care4Dystonia Magnet Awareness Program 2006-7. To learn more visit http://care4dystonia.org/index.php/dystonia/magnet-awareness-program/ for further information.
Care4Dystonia Media Activities ( pdf format ) 1998- 2006
To help redefine Dystonia, join the conversation and debate at our Educational Forum.
Initiatives for 2008:
- HealthCare Trend Dystonia Survey completed June 30 2007.
- Health for ST Survey completed October 2007
- 10 Minute, 10 Question Dystonia Survey Feb 2008
- “2 Households, 2 Lives ” is being edited for submission to a formal publisher for 2009 release.
- Dystonia Flash Movie for YouTube online now.
- Vibrant Dystonia C4D Brochures now available for distribution, giving a new look to dystonia.
- “Are You at Risk for Cervical Dystonia ?”Risk Assessment Tool is online and is being made into a DVD version —–> 2008
- Dystonia Calling Dr. Oz —–> Feb 2008
- The Cosmo Movie-Ad —–> on our Home page !
- C4D joins Facebook for exposure. See our Milestone page for more info about our social networking links.
- www.dystoniaeducationforum.com under construction —-> 2008
- DBS brochures released —–> May 2008
- PSAs with Alice Cooper released for C4D and www.tremoraction.org —-> April 2008
- New Educational Forum begun —-> June 2008
- ST aka Cervical Dystonia brochures released —-> June 2008
- Botulinum Toxin Therapy brochure under development —-> 2008
- Oz DVD Available for Purchase —-> June 2008
- 2 Nursing Journals accept DBS Dystonia manuscripts—-> May- July 2008
- Inside DBS article for Dystonia, Inc. —-> July 2008
- Rose Awareness Postcards donated by artist Mary Telfluer Holden—> July 2008
- Awareness T-Shirts released for purchase—-> July 2008
- Silent Auction joint effort with DAK —-> Sept 2008
Copyright © C4D 2006-2008.