Making our Case ~ The First in a Series of Articles
The national Tourette Syndrome Association (TSA) has established itself as the leading voice worldwide for a medical condition that traumatizes and disrupts the lives of millions of children and adults.
The TSA has spent many millions in funds and public donations, yet they have failed to find the cause or cure for Tourette syndrome. Meanwhile they have stonewalled those who presented viable new avenues to explore.
Their medical and scientific advisory boards have repeatedly been informed by physicians and families that a connection with allergy and Tourette syndrome has been observed. Yet the TSA has not robustly explored the role of allergy and the immune system in this disorder.
Our organization—which had a working relationship with the TSA for years as a liaison on alternative therapies—begged them 20 years ago to pursue studies on the role of the immune system related to diet, allergens, and toxic chemical exposures. They have not.
Due to a lack of guidance from the TSA, doctors continue to instruct patients that Tourette syndrome is genetic disorder and there is no cure. Recently the term “environment” has crept into the TSA 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 has not given clear guidance to families and professionals on what this might mean. The environment? What aspects of it? What should people do?
As an excuse for their lack of action, the TSA hides behind the fallback line that “studies don’t support it.” Well, duh. That’s because there aren’t studies. And there aren’t studies because TSA, as the world leaders, have not communicated to key research institutions about the urgency of studying these issues.
For years I’ve told myself in frustration: “It’s a crime.”
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 recently studied the association between Tourette syndrome, OCD, and allergy had to call it a “preliminary study.” After all these years of TSA leadership, it 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.”
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|Part 6||Part 7||Part 8||Part 9||Part 10|