To the Tourette Syndrome Association: Please Keep an Open Mind

This encouraging comment was written by Penelope Bridges, a mother in the UK, in response to Why the Tourette Syndrome Association Should Be Investigated: Part Seven.

I can and can’t believe this. I can believe it because I have myself experienced people in key roles being dismissive and closed-minded. I can’t believe it because it is astonishing how blinkered people can be? And, given those people have such a key role to play in supporting TS sufferers, do they realize how damaging their actions are?

I reminded my little girl of 11 just this morning that a lady she does not know in America wrote a book which changed the course of her life…and saved it. Had I not come across your book, Sheila, she would probably be taking the zombie aka TS drugs by now and have had significant negative psychological impact by having to cope with tics in school and everyday environment, let alone the physical strain of having to cope with tics.

Actually, what your book showed was that many TS sufferers need not tic, or tic as badly, with a little knowledge. The mental health damage and physical exhaustion can be avoided.

So, to the TSA professionals reading this, please keep an open mind and listen to Sheila Rogers. She has dedicated most of her life to helping others by sharing what she has learned. If she appears to be attacking your organisation, you must understand that she is passionate about what she has learned and to not share this knowledge and experience with others is criminal.

I write this as the mother of a child diagnosed with TS who is leading a normal life thanks to Sheila sharing the findings of families and forward-thinking physicians. My daughter’s life would have been far from normal if I had not found her book by chance on Amazon.

Please put aside the politics and share her work with those TS sufferers in need…in doing so, you could transform people’s/children’s lives just like my daughter’s was.

As parents, we may have spent our lives training as different non-medical professionals, e.g. accountants, lawyers etc but we are professionals or experts in the field of observation of our own children as we take care of the 24 x 7 x 365. We are effectively conducting life-long research in observing the development of our children.

The potential negative impact of nutrition and our environment is real and cannot be ignored…whether this manifests through tics, allergic response, neurological or behavioural symptoms, or other damage. I hope that you will allow and support these non-invasive, non-intrusive treatments or indeed simply education, for those who would benefit.