This is the final article in a series that has documented the Tourette Syndrome Association’s (TSA) failure to determine the cause of Tourette syndrome and find safe, effective treatments for symptoms.
The question now is: Where do we go from here?
For starters, we need to recognize that the TSA isn’t going to change. It will keep doing a good job of raising awareness and advocating for those who suffer from Tourette’s. Meanwhile, their medical and scientific advisory boards will keep barking up the wrong tree until they move past these false beliefs:
- The false belief that Tourette syndrome and related tic disorders are best diagnosed with simple checklists rather than through a comprehensive medical evaluation of the patient.
- The false belief that Tourette’s is a mysterious and incurable condition with symptoms that spontaneously wax and wane for no definable reason.
- The false belief that neurologists, psychiatrists and psychologists, rather than other medical specialties, hold the key to Tourette syndrome.
These false beliefs are part of their “culture,” and the TSA has shown no interest in changing course in time to help the current generation of children.
I’ve struggled with how best to move forward—until now.
I have often been intimidated with this ACN Latitudes effort, perhaps with good reason. After all, the TSA’s current assets are more than 18 million dollars. Our nonprofit organization runs on empty, without even a paid staff. When I reflect on our challenge, I realize how often anger fueled my work:
- Anger that TSA board members manage to hold their heads high during Tourette conferences, even as the air is punctuated with squeaks, coughs, grunts, curses, and yelps from attendees.
- Frustration that the same unhelpful, narrow-minded medical advice is given out year after year.
- Dismay that TSA staff can watch the undulating sea of twisting, shrugging, blinking, grimacing, and jerking bodies in their audiences and not be mortified that this reflects the best their therapies have to offer.
Every time I grew weary of volunteering for this project and considered quitting, this anger would surface. It propelled me, and in that sense it served a purpose. Now it is time to take the diagnosis and treatment of Tourette syndrome in a completely new direction from that of conventional medicine.
ACN Latitudes will counter the false beliefs held by the Tourette syndrome medical community by accomplishing these goals:
- Show that patients presenting with tics are best diagnosed with a comprehensive medical evaluation, not just a checklist.
- Show that tics and related symptoms reflect an underlying biological/physical imbalance that can be treated and that symptoms wax and wane under the law of cause and effect, not some mysterious force.
- Show that a collaborative and multidisciplinary approach is required to determine the causes and best treatments for tic disorders.
The goals of our initiative
- Sponsor collaborative think-tank conferences for professionals and the public to share insights into the best way to diagnose and treat tic disorders.
- Develop a new protocol for the assessment of patients with tic disorders, including Tourette syndrome, that includes contributions from experts in immunology, allergy, internal medicine, neurology, toxicology, nutritional therapy, gastroenterology, environmental medicine, laboratory assessment, and a comprehensive range of integrative approaches.
- Educate the public and medical community on new findings related to the diagnosis and safe treatments of tic disorders through our website, publications, workshops, conferences, and grassroots efforts.
- Hire a streamlined, effective staff for the organization.
- Fund research into new diagnostic approaches and treatments.
- Network with other health groups that share a similar vision.
To accomplish this, we need a much stronger organization. We need your help!
How you can be part of this exciting initiative
I believe that one day, the current diagnosis and treatment of Tourette syndrome will be looked at as one of the worst blunders in modern medicine. Unfortunately, generation after generation has been disempowered by the false beliefs propagated by the TSA and other mainstream institutions. Families have been told they were wasting their time by looking for answers. At this point, only a small percentage buck conventional advice and find real help. It’s time to put new assessments and treatments for Tourettes and other tic disorders on a fast track that will help today’s children.
I’m really looking forward to hearing from you.
|Read the Other Parts of this Series:|
|Part 1||Part 2||Part 3||Part 4||Part 5|
|Part 6||Part 7||Part 8||Part 9||Part 10|