We hope to include as much positive content as possible in order to show what those with TS can achieve. The media tend to focus more on the negative features and portray more sensational, albeit rarer, aspects of the disorder to increase appeal. We always like to hear success stories that might inspire others to meet their challenges or disadvantages.
We also provide abstracts of scientific and other publications that are relevant to Tourette Syndrome and associated disorders to enable quicker access to current research findings and hope eventually to provide an improved searchable database. Such abstracts provide a valuable resource for those wishing to learn more about evidence-based TS research and may be of interest to everyone.
This is not, primarily, a support service but rather a means to find the resources, advice and information that may help you. For direct support, there are many excellent National Tourette Syndrome associations and other organisations whose contact details/URLs are available on our 'Resources' page and elsewhere on the site.
The following assumptions are made:
- That people with Tourette Syndrome deserve the same opportunities as others and should be protected from discrimination or denial of provision by equality laws
- That an educators' responsibilities include providing the best education for a particular individual accounting for any educational disadvantage due to 'disability' they may have
- A physician's principle obligation and professional duty is to act only in the 'best interests' of their patient and only make clinical judgements according to clinical need which must be evidence-based
- The only reason for misunderstanding TS (including professionally) is a lack of awareness of the existing freely-available literature and information and in some circumstances insufficient advocacy or prejudice
- Science and clinical evidence, not politics (nor media or popular misconceptions) should determine understanding, diagnostic criteria and underpin treatment and awareness advocacy
It is understandable that many parents and relatives are often bewildered by a diagnosis of TS in their child or family member. Parents in need of advice, reassurance and mutual support form the larger proportion of those who seek contact and information through TS organisations and online resources and are often responsible for a larger part of fundraising and campaigning. Parents want to do the best for their child and do all in their power to help them negotiate the complexities and demands of family life with TS as well as the educational and clinical/therapeutic options and challenges. The internet has helped increase immeasurably the opportunities for developing support and improved understanding and awareness and bring interest groups together across the world and bridge cultural divides.
There is also a growing movement for individuals with TS to want their voices to be heard. More and more people want to represent their interests 'directly' and speak out about what TS is actually like to have from their perspective and tell their stories. Those with TS are themselves challenging many of the misconceptions that have prevailed about Tourette's and many have become effective and high-profile advocates for the rights of those with the disorder and their achievements have helped inspire others to develop a greater belief in themselves and their own abilities and potential. This is something we wish to embrace and contribute to and hope TSfocus will be a small part of this movement for change. We hope the future will be better and that much of the unhelpful, inaccurate and 'denigrating' mythology about the disorder will be reduced for the benefit of all.
Comments are welcome and discussion is encouraged. However insensitive, prejudicial or offensive comments are not welcome. Comments, if made, even if controversial, should be expressed with decorum, balance and politeness and above all be of help to others. A principle aim is to encourage evidence-based dialogue and discuss specific known issues experienced by individuals with Tourette Syndrome. References and links to valuable resources are helpful. TSfocus is NOT intended to be a forum for clinical, scientific or general debate on Tourette Syndrome or it's associated disorders. The considered debate on the nature and management of TS takes place in the scientific publications where discussion is hopefully based on consensus, accurate data sampling and a peer-reviewed evidence-base. Open discussions/advice exchange are possible on a number of existing blogs, forums and an increasing number of FaceBook groups. Contributors to TSfocus give time freely but do not have resources sufficient to be able to respond directly to correspondence. Links to excellent online/organisational resources for support and discussion are posted on this site.
Advice presented here should not been seen as definitive and a qualified and consensus opinion on matters clinical, should be sought always. Clinical evaluation and pharmacological management of Tourette Syndrome and other related neurodevelopmental conditions should involve the guidance of appropriate health professionals who are of verified competence. Your national Tourette Syndrome Association should be able to provide a listing of 'approved' specialist physicians. Always read further if necessary. Becoming an expert patient or parent is a great advantage as expertise and familiarity with current evidence is often inconsistent even among professionals and helps you prompt and encourage, in the right direction, those on whom you may depend for clinical, social and educational support
