Tourette Syndrome: Everyone Can Play a Role
June is Tourette syndrome month. Learn how everyone, including CDC, can play a role to improve the lives of people with Tourette syndrome.
Tourette syndrome (TS) is a neurological condition that causes people to have tics, which are sudden twitches, movements, or sounds that people do repeatedly. Having TS can have a serious impact on individuals and their families.
What we know about TS
Symptoms usually begin when a child is 5 to 10 years of age. Tic symptoms can vary from mild to severe, and can change over time. Often, tics decrease during adolescence and early adulthood, and sometimes disappear entirely. However, many people with TS experience tics into adulthood.
It is unknown exactly how many people have TS, but perhaps 1 or 2 of every 360 children have TS. Many people who have TS also have otherneurobehavioral conditions. The most common ones are attention-deficit/hyperactivity disorder (ADHD) and obsessive-compulsive disorder.
What CDC can do
Living with TS can impact a person's health, education, employment, family relationships, and friendships, and has wide-ranging impact on their physical, mental, and emotional well-being. Children with TS often need additional health care and educational support. There are substantial costs for people living with TS.
Children with TS and their families may face many challenges. People are becoming more aware of TS, but there is still much misunderstanding and lack of knowledge, even among health and education professionals. This can lead to delays in diagnosis, so that many children do not have timely access to effective care and support.
Because of its impact on physical, mental, and emotional well-being, TS is a public health concern. CDC is conducting research to better understand TS and to inform outreach efforts to improve the health and wellbeing of people living with TS.
CDC conducts research to understand the factors associated with TS, and the public health impact of TS:
CDC conducts research to understand the factors associated with TS, and the public health impact of TS:
- Using national surveys to assess TS and other neurobehavioral conditions as part of ongoing national monitoring efforts. Read more about TS data and statistics here.
- Collaborating with research partners to understand the impact of tic disorders and other conditions that often occur along with TS. Read more about the research here.
- Collaborating with universities on a set of new, community-based studies of children's mental health that includes TS and tic disorders.
CDC can continue to work with partners to look for more ways to understand TS and to improve the lives of people with TS.
What the Tourette Association can do
For 11 years, CDC has funded and supported the Tourette Association of America (formerly Tourette Syndrome Association-TSA) to provide much-needed educational programs that share evidence-based information about TS. The Tourette Association-CDC Education and Outreach Program:
- Provides healthcare professionals, educators, and families with information on recognizing tics and TS, and about treatment options, including Comprehensive Behavioral Intervention for Tics or CBIT.
- Dispels myths and stigma associated with TS.
- Educates professionals and families on TS and how it impacts children's lives, and what they can do to help children learn.
- Supports families and individuals affected by TS so that they can manage their condition, be more understood by those around them, and have the opportunity to succeed in school and work.
The Tourette Association-CDC Program has conducted over 800 educational programs for more than 40,000 professionals and community members in every US state . Each year, over 32,000 more professionals receive Tourette Association-CDC educational materials through exhibits, mailings, and other outreach efforts.
The Tourette Association can look for more ways to educate and support people with TS and everyone involved in their lives.
Learn more about the program and its impact here.
What families can do
Families need the right information on the signs of tic disorders and the best treatment options, and with this they can help their child get an early diagnosis and health care that matches their child's needs. Parents can also learn about their child's educational rights and collaborate with schools to support their child's education. Read more about what families can do here.
What peers can do
Bullying is a big problem for children with TS. Peers who understand that tics are not on purpose and that children with TS are just like other children can help them feel accepted and can help stop bullying. Learn more about bullying here and watch a video about how peers can help here.
What education professionals can do
Education professionals can learn about tic disorders and how it impacts learning so that they can respond supportively and help children reach their full potential. Read more about resources and opportunities for education and training.
What healthcare professionals can do
Healthcare professionals can learn about the diagnosis of tic disorders and other conditions that often occur with TS, and about the best treatment options, including behavioral treatment for tics, CBIT. Read more about diagnosis and treatment , and about opportunities for training and education.
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