Making our Case ~ The First in a Series of Articles
The national Tourette Syndrome Association (TSA), renamed the Tourette Association of America (TAA) in 2015, has established itself as the leading voice worldwide for Tourette syndrome, and it has failed in its mission.
To avoid confusion, throughout this series this organization will most often be referred to as TSA/TAA because many references relate to its operation under the original name.
Tourette’s is a medical condition that traumatizes and disrupts the lives of millions of children and adults. The TSA/TAA has spent many millions in grantss and public donations, yet they have failed to find the cause or cure for this condition. Meanwhile they have stonewalled those who presented viable new avenues to explore.
The medical and scientific advisory boards of this organization have repeatedly been informed by physicians and families that a connection with allergy, the environment, and Tourette syndrome has been observed. Yet they have not robustly explored this area.
Our organization had an informal working relationship with the Tourette Syndrome Association for a number of years. I served as a volunteer liaison on alternative therapies, at their request, until it was clear that we were not able to change their focus. We urged them 20 years ago to pursue studies on the role of the immune system and the environment related to diet, allergens, and toxic chemical exposures, among other issues.
Due to a lack of guidance from the TSA/TAA, doctors continue to instruct patients that Tourette syndrome is an uncurable genetic disorder. Recently the term “environment” has crept into the literature because it is increasingly clear, with new findings and the growing incidence of this disorder, that genetics cannot be fully to blame. But the TSA/TAA has not given guidance to families and professionals on what this might mean. The environment? What aspects of it? What can and should people do?
As an excuse for their lack of action, the organization hides behind the fallback line that “studies don’t support it.” Well, that’s because there aren’t studies. And there aren’t studies because TSA/TAA, as the world leaders, have not communicated to key research institutions about the urgency of studying these issues, nor have they funded them.
The lack of progress in this field is indefensible
It’s a crime for the TSA to profess to be experts and yet let children suffer because they have not told the medical community and the public that allergy could be playing a significant role in Tourette syndrome symptoms. It’s a crime to not provide information on the benefit of exploring the potential role of diet so families can learn if foods might be aggravating symptoms. It’s a crime to not tell families that allergens can aggravate the nervous system and may be triggering tics. It’s a crime to not warn families that toxic chemicals in household and personal products may be adversely impacting their child’s nervous system.
And it’s a crime that a group of researchers in Turkey/MidEast who studied the association between Tourette syndrome, OCD, and allergy in 2014 had to refer to it as a “preliminary study.” After all these years of TSA/TAA leadership, looking at this link is only preliminary. But kudos to the researchers: Yuce M, Guner SN, Karabekiroglu K, Baykal S, Kilic M, Sancak R, Karabekiroglu A. “Association of Tourette syndrome and obsessive-compulsive disorder with allergic diseases in children and adolescents: a preliminary study.” The study abstract is here.
The abstract includes this summary: “This preliminary study shows an association between allergic diseases and TS and/or OCD. The results revealing differences in associations between types of allergic disease (rhinitis or eczema) and neuropsychiatric disorder (tic disorder or OCD) need to be investigated in further studies with higher numbers of participants, and immune markers should be examined.”
In this series we will explore the medical politics and failings of the TSA/TAA that have left patients and families without answers, without substantial progress in this field.
|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|