Wednesday, April 02, 2014

trying to reach Ellen

We are trying to reach ELLEN.  Drew wants to get the word out during National TS Awareness month about Tourette's and how it effects kids and adults.  He wants her to tell the world that there is no cure.  It can get better.  He wants her to know there is no REAL treatment.  There are a few things that can be done to lessen the symptoms.  He wants her to know there is no real research being done for a cure.  He wants Ellen to know that Tourette's is not what TV portrays it as.  It is not someone cussing continually. That is Coproillia.  And less than 10 % of the 200,000 people who have TS suffer from this.  He wants her to know it is so much more. It is OCD, Anxiety issues, sensory issues, being tired all the time because a person with TS doesn't stop moving. And you feel you have to hide your tics so you won't bother others. It is being bullied by kids and adults because you think differently and can't always stop what comes from your mouth. It is not being able to stop yourself from doing something you know might hurt because it has to be done. It is sitting my yourself at lunch because kids don't want to sit next to you.  It is playing alone on the swings and kids coming over and calling you names.  it is your parents deciding that you would be better at home for school because it is just to hard to face the bullies everyday.  it is teachers turning the other way and allowing it to happen. It is your mom and dad (and 250 facebook friends of theirs who post encouragement) who know you can finish math homework even when teachers don't.

It is isolating because when adults won't get educated they can't educate kids who call you weird, strange, stupid (because you can't remember things) It is watching people like Henry Winkler, Brad Cohen and Dan Akroyd and others who have had disabilities who have overcome because they give you some hope that someday you will be "normal".  It is listening to Wil Wheaton tell a girl it is OK to be a nerd and like comics because it is what you have to hold on to because your hero is batman. It is being told batman doesn't exist because kids say super hero's aren't real (I know they aren't but they keep me going) It is playing alone with legos because no one will play with  you.  It is hoping that there will be someone who wants to come to  your birthday party, and your parents having to have a back up plan in case no one wants to come.  It is

PER the CDC:

In the United States

  • It is not known exactly how many people have Tourette Syndrome (TS). A Centers for Disease Control and Prevention (CDC) study has found that 3 of every 1,000 children 6 through 17 years of age and living in the United States have been diagnosed with TS based on parent report; this represents about 148,000 children. Other studies using different methods have estimated the rate of TS at 6 per 1,000 children.
  • Among children with TS, 27% have been reported as having moderate or severe forms of the condition.
  • TS affects people of all racial and ethnic groups.
  • Males are affected three times more often than females.
  • A TS diagnosis is twice as likely among non-Hispanic White people than among Hispanic and non-Hispanic Black people.
  • A diagnosis of TS is twice as common among children 12 through 17 years of age as among those 6 through 11 years of age.

Co-Occurring Conditions

  • Among children diagnosed with TS, 79% also have been diagnosed with at least one additional mental health, behavioral, or developmental condition, such as:
    • Attention-deficit/hyperactivity disorder (ADHD), 64%;
    • Behavioral or conduct problems, 43%;
    • Anxiety problems, 40%;
    • Depression, 36%; and
    • Developmental delay affecting his or her ability to learn, 28%.
  • More than one-third of people with TS also have obsessive-compulsive disorder.2,3

No one knows what TS is and Ellen you could shine a national spotlight on this. No one talks about this and we need your help to get the word out!  It is someone like you who says be kind to each other every day who can show the world that we are just like everyone one else.


Drew Anderson and his mom!

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