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?Tourette Kids?

Sometimes we are happy

Sometimes we are sad

Sometimes we get teased

Sometimes we get mad

Although we seem different

When tics appear each day

Remember this disease chose us

And no the other way

So if we jerk, or yell, or swear

Please try not to forget

It isn?t us doing it

But a disease called Tourette

—-Jason Valencia—-


1986, 10 years old

Living with Tourette syndrome gives a deeper insight to the highly misunderstood and understated disease, Gilles de la Tourette syndrome. The book delves into the origin of the disease, the symptoms, the medications, and the treatments. Then the author gives thoughtful advice, a guide, so to speak, for parents, relatives, loved ones, and sufferers of Tourette. The author Elaine Fantle Shimberg, is the mother of three children with Tourette Syndrome and a board member of the Tourette Association. She has authored twelve books and gives lectures around the world about mothering three Touretters.

To understand the disease, you must know its interesting history. In 1885, the French physician, Dr. Georges Albert Eduoard Brutes Gilles de la Tourette, first suggested that the disease?s symptoms were part of a distinct condition different from other movement disorders. (Shimberg, 1995 p.25) Tourette studied several patients he believed to have the disorder. These studies included a French noblewoman who used to interject obscenities during conversation. (This is also known as coprolalia,) Tourette came to the conclusion that TS was hereditary, (Shimberg, 1995, P.67) that the disorder did not have any intellectual or psychological deterioration, (Shimberg, 1995, p.69) and he also correctly identified the childhood onset of the disease.

For decades after Tourette?s discovery, Tourette Syndrome was believed to b4e a psychological disorder. With the twentieth century and the age of Freud?s psychoanalysis, new ideas and theories about Tourette Syndrome came a dime a dozen. Hysteria, schizophrenia, mental instability, sexual dysfunction, narcissistic disorder, and poor family dynamics were just a few of the speculated causes of that era. (Shimberg, 1995, p.66) It wasn?t until the mid 1960?s that researchers work helped our present understanding of Tourette came to be. It was finally acknowledged that the disorder was biologically based, thereby changing the belief that TS was a psychological or psychogenic disorder. (Shimberg, 1995, p.66)

Tourette syndrome, also called Tourette?s Disorder, is known to be a neurobiological tic disorder involving both motor and phonic tics. TSA is not a psychological illness or psychosis. The disease is biochemicall6y base4d and is genetically transferred, that is, a person is born with it, and it is not contagious. (Shimberg, 1995, p.81) TS is characterized by repetitive, sudden, and involuntary movements.

Although there is no known medical, biological, or psychological test to diagnose Tourette Syndrome, specific guidelines were compiled in the 1980?s by the American Psychiatric Association. According to the American Psychiatric Association?s Diagnostic and Statistical Manual of Mental Disorders, also known as DSM-IV, five symptoms must be present.

1. Both multiple motor and one or more vocal tics must have been present at some time during the illness, although not necessarily concurrently. A tic is defined as a sudden, rapid, recurrent, non-rhythmic, motor movement or vocalization.

2. The tics occur many times a day, usually in bouts, nearly every day or intermittently throughout a period of more that one year. During this period, there must have never been a tic-free period of more than three consecutive months.

3. The disturbance caused marked distress or significant impairments in social, occupational, or other important areas of functioning.

4. The onset of the disease?s symptoms occurs before the age of eighteen, and

5. The disturbance is not due to the direct physiological effects of a substance or general medical condition.

Over 35 million people in America have tics, so TS is hard to diagnose, and the disorder is usually misdiagnosed as a nervous condition, disruptive behavior, and sometimes even allergies. Often, people with mild TS do not even seek medical attention. Simple transient childhood tics occur in 15 to 24% of schoolage children and this too, makes a correct diagnosis difficult to make. (Shimberg, 1995,p.26)

It is believed that one in every 200 people in the United States or almost 1.3 million Americans have Tourette syndrome. The disease affects people of all races, social, economical, religious, and cultural backgrounds. Symptoms usually develop between the ages of two and sixteen, but in some rare cases, symptoms have developed as late as twenty-one. TS is also proven to affect 3 boys to every girl. There is no medical explanation for this phenomenon. The most common tics are sniffing, coughing, sneezing, rapid blinking, and head, neck, and shoulder jerks. 80% of those with Tourette have eye and eyelid tics. (Shimberg, 1995,p.74)

People with TS develop symptoms that are subtypes of separate disorders. 10 to 30% of Touretters develop coprolalia. Coprolalia is the most disturbing vocal tic. It is marked by the sudden and uncontrollable urge to blurt out unacceptable words or phrases. This includes, but is not limited to, ethnic and religious slurs, crude references to anatomy bodily functions, sexual acts, and derogatory words and phrases. People with coprolalia often have trouble at school and work. Some are able to develop mental coprolalia, or the ability to repeat the words in their head instead of outloud. The medication Haldol helps some of the sufferers of this condition.

Copraxia is another subtype. This is a motor tic that incorporates involuntary, and obscene, socially unacceptable actions. Giving the finger and grabbing or pointing at one?s own or other people?s breasts and genitals. This occurs in only a small number of people. Echolalia, a vocal symptom, is the involuntary repetition of another person?s last word or sentence. These people imitate sounds, too occasionally.

Sometimes, people develop mental echlalia. The only downfall of mental echolalia is the person may not hear what is being said while they are repeating the words. Palilalia is the repetition of one?s own last word, phrase, or sentence. (Shimberg, 1995,pgs. 30-36)

Many people believe that every Tourette sufferer has typical behavior. The only thing that is typical of all Touretters is the sudden, involuntary, rapid, and purposelessness of every sufferer?s unique tics. The type, frequency and combination of tics, both motor and vocal, are variable. Other variables are the onset, fluctuation and duration of the tics from person to person. Subtypes, severity and the development of other semi-related disorders are also variable. Hyperactivity, Attention Deficit Disorder (A.D.D.), Attention Deficit Hyperactivity Disorder (A.D.H.D), Obsessive-Compulsive Disorder (O.C.D) and Self-Injurious Behavior (S.I.B.) are some of the semi-related diseases most commonly developed. (Shimberg, 1995,p.43)

It is speculated that between 30 and 50% of those with TS may have Attention Deficit Disorder, with or without hyperactivity. Individuals with TS have varying degrees of obessive-complusive traits. Some people may have Obsessive-Compulsive Disorder and Attention Deficit Disorder in addition to Tourette syndrome. It is totally possible for someone to have TS and mot have any other associated disorders. (Shimberg, 1995,p.44).

Obsessive-Compulsive Disorder is characterized by recurrent, unwanted, and unpleasant thoughts (obsessive), and or repetitive and ritualistic behavior, which the person feels driven to perform (compulsions). Most people have some form of compulsion; it just doesn?t interfere with their everyday life. Studies show that OCD makes sufferers slow to mature socially, and they often experience difficulty once they are adults. Trying to create and maintain friendships and relationships with people is very difficult for those with OCD.

Some typical obsessions include, but are in no way limited to,

A. fear of dirt, germs, and contamination,

B. fear of acting on violent impulses or aggressive behavior,

C. over concern with order, arrangement, or symmetry of objects,

D. constant doubts

E. abhorrent thought that violate society?s morale,

F. feeling overly responsible for everything,

G. Saving and hoarding items. (DSM-IV, 1994).

OCD tends to follow a waxing and waning course, much like TS. Those with OCD excel in masking their behavior. The diagnosis is difficult to make with this disorder. It is believed that OCD begins in adolescence or early adulthood, but sometimes it may manifest in early childhood. Many people with OCD are successfully treated with medication, such as Prozac and Paxil. These drugs are also used to treat TS. The most effective intervention for OCD is medication plus behavior modification therapy but it is only successful in about 25% of those suffering from OCD.

Attention Deficit Hyperactivity Disorder is often interchangeably used with Attention Deficit Disorder. It is also related to hyperactivity and minimal brain disorder. ADHD often travels alongside TS. ADHD caused people to become impulsive, restless, and inattentive. The disorder has negative effects on social activities and personal interaction learning abilities, and the psychological well being of a person. Research is not sure that the gene responsible for TS also causes ADHD. (Shimberg, 1995, p.60)

Boys tend to show ADHD in a 3 to 1 ratio to girls. The symptoms of the disorder usually show by the age of four, and almost always by the age of six. (Shimberg, 1995,p.61) ADHD is expressed by the person?s inability to stay focused on a task, to be impulsive, and or excessive motor activity. (Shimberg, 1995,p.60) there is neither a test nor a cure for ADHD, but medication can help with the disorder, namely Ritilin. (Shimberg, 1995,p.64) Adults too can have the disorder. 40 to 60% of children with ADHD grow up to have symptoms as adults. (Shimberg, 1995, p.62) More than 10 million Americans are thought to have ADHD.

2 out of every 3 children with Tourette syndrome also complain of tactile sensitivity. This is called sensory integrative disorder, and is not uncommon in TS, although tactile sensitivity is found in those who do not duffer from TS. Sensory integration disorder is characterized by hypersensitivity of the senses. It can be misinterpreted as behavior problems. It is not uncommon to have an auditory sensitivity accompany skin sensitivity. This makes it difficult for the person to concentrate with background noises. (Shimberg, 1995,p.45)

Out of a survey of 132 respondents, 93% of the Touretters identified having a mental or physical awareness, and urge, a feeling an impulse or a need to experience a tic. (Shimberg, 1995,p.29). Some people say it is a pressure. Others say it is a brain itch or an aching feeling. Some adults and children become very adept in masking symptoms around others. Tics may be temporarily inhibited and suppressed to some degree, but when a suppressed tic is let loose, it may be violent or severe. Tics may magically disappear for days, weeks, sometimes even months. But, they do return if not the same tic, then a new one. The further outlook for someone with Tourette has many positive aspects to consider. Although there is not a cure, the disease is not life threatening, nor does it shorten life expectancy. Research shows that the symptoms often disappear when the person is totally focused. Some symptoms lessen with age. 30 to 40% of the overall symptoms diminish markedly. (Shimberg,1995,p.34)

Tourette syndrome often appears in the same family. Parents of Touretters usually exhibit some symptoms, as well as siblings. TS definitely has a genetic tendency. The possible underlying neurological factor in TS is implicated by the hypersensitivity of the dopamine glands and the dopamine receptors in the substantia nigra (a midbrain structure) pathway. TS is closely related with dopamine (feels good) and seratonon (depression). A specific gene has still not been located. TS has an autosomal dominant inheritance, and has incomplete penetrence, or silent carrier. Females that ca5ry TS have a 70% chance of developing symptoms. Males that carry TS have a 99% chance of developing symptoms.

There is a full 30% chance that female carriers will show no symptoms at all. Males only show a 1% chance of having no symptoms. Tourette syndrome and chronic tics are more likely to be had by males, whereas females are more likely to develop Obsessive-Compulsive Disorder symptoms. Many studies show that 10% of children who do inherit the TS gene have symptoms severe enough to seek treatment. Most people are never diagnosed because they do not seek medical attention. This is why it is difficult to count how many people have TS.

At the present time, there are no genetic or biochemical tests to determine if a person is a carrier for TS, or whether the child will develop TS if the gene is inherited. there is no prenatal testing to determine the type of symptoms the child will have, or the severity of the symptoms. A person must wait until the TS gene is developed.

There are also several additional possible causes. In the early 1990?s, research at the National Institute of Mental Health (NIMH) and the Memorial Hospital of Rhode Island (MHRI) showed that antibodies that are associated with strep infection may provide the environmental trigger in susceptible families for a variety of movement disorders, including Tourette Syndrome (Shimberg, 1995,p.110). Investigators speculate that an immunological reaction to neuronal tissue set off by these streptococcal products contribute to the development of tics and their combination as well as ICD symptoms (Shimberg, 1995,p.111). This research may prove family history of tics, OCD, ADHD, and rheumatic fever. As presently known, environmental factors of themselves, do not cause TS. Many TS symptoms resemble those of allergies, such as blinking, sniffing, throat clearing, and coughing. Treatment for allergies may help reduce and relieve some of the symptoms of TS.

At the present time there is no cure for Tourette syndrome. However, there are many different treatments available, both medical and non-medical, that have been proven effective in treating, and reducing the severity and frequency of the tics in some people, some of the time. Nothing works all of the time. The uniqueness of every person?s symptoms makes TS impossible to treat in a one for all type of order. There are vast differences in the type, severity, and frequency of the symptoms expressed, from extremely mild tics to disabling, chronic illness. 70% of people with TS have mild symptoms and do not require medical attention.

The most common form of treatment for TS is pharmacotherapy, or treatment with drugs. The most frequently prescribed drugs are Haldol, and Clonidine. There are immense side effects that go along with these medications. They range from fatigue and weight gain to sedation and irritability. Other side effects include personality changes, depression, dry mouth dizziness, and in some rare cases, Tardive Dyskinsia, a condition that involves involuntary chewing like motions and tongue thrusts. (Shimberg,1995,p.57)

There are also several alternative therapies, such as hypnosis, and biofeedback. In some cases, these therapies may lessen the side effects of medications. Hypnosis is proven to reduce stress and promote relaxation, as does biofeedback. These therapies may also reduce the frequency and severity of tics. It also appears that when some children?s allergy symptoms respond favorably to allergy treatments, their manifestations of TS are at the same time reduced. There are also some who believe touch therapy helps some Tourette sufferers.

Tourette Syndrome carries many problems. Some children and adults have difficulty in handling frustration and anger. They may strike out at others and at themselves. They may hit, kick, bite, or throw things. Some people with Tourette have touching tics. They feel a compulsion to touch breakables, hair, or clothing. Some may touch the ground as they walk; others touch things with their nose or tongue. More serious problems arise when the person touches their breasts and genitals in public. Some may even touch hot stoves and electrical wires.

Many people with TS have the need to smell things. Some smell their shoes before they put them on; others smell their underwear after they take them off. Some smell the grass and the leaves, and some others smell people. This obviously creates a dilemma. Some TS sufferers develop self-injurious behavior. These people feel the need to cause themselves pain, to make themselves bleed, and generally just hurt themselves. They may cut themselves with razors, bang their heads on the wall, or hit their hand against something until they hear their bones crack.

Some Touretters develop sleep disorders. TS sufferers do have sleeping tics, both motor and phonic, and suffer from disturbed sleeping patterns. Some have difficulty in falling asleep, early waking, sleep walking and sleep apnea. Children are likely to have night terrors and bed wetting problems.

For Touretters, going out in public and dealing with strangers can be major ordeal. But most sufferers try to explain to the staring strangers that they have a medical condition. Others ignore the starer and like there is nothing wrong. Wearing a medic alert bracelet or necklace can help with medical and police emergency situations. People with TS learn to cope with their condition and accommodate their needs quite sufficiently. They go out carefully planned, non-peak hours because they do realize that others have rights to see a movie or dine in peace.

Researching this paper has had a profound impact on me. I really feel for the sufferers of this senseless disease. Sometimes we take things for granted, like the simple act of walking undisturbed, and unnoticed down the street. People with TS are constantly gawked at. They are very misunderstood. People who do not know about the disease can be down right cruel. The next time I see someone walking and ticcing, I will not stare. Instead, I will know what is wrong with that person and I know that they cannot control their disease and did not ask for it.

In conclusion, I end with the words of Jason Valencia, a Tourette sufferer.


Who are you to judge

Because I?m not the same as you

Some actions and some words I say,

I do not voluntarily do.

Who are you to make me cry?

Because you think odd of what you see?

Have you never given a second thought

To take a deeper look at me?

If you look beyond my physical traits

And see the person inside,

You?ll see how tough my struggle is

Fighting something I am not able to hide.

Maybe I spit. Maybe I swear,

Or constantly tap my hand.

How do I explain these things to you,

When I myself don?t understand?

Yes, it hurts me deep inside

When I hear the taunting words you say.

And you, my friend, may need me near

When you get judged one day.

Understand that I?m not crazy

I?m not trying to make you mad.

Understand I have unique problems

That I?ll probably always have.

I don?t expect you to treat me

Differently, nor cut me lots of slack,

The only thing I ask of you is

Please? Don?t turn your back.

1993, age 17


American Psychiatric Association: Diagnostic and Statistical Manual IV Washington D.C., 1994

American Journal of Psychology, ?Premonitory Urges in TS?, 150:1, Jan. 93

Dreher, Nancy. ?What is Tourette?? Current Health, Oct. 1996, V.23, p.21

Shimberg, Elaine Fantle. Living with Tourette, NY, NY. 1995, Fireside.

The New Yorker, ? Moma when its jerking? , April 1995,V.71 p.34-36


American Psychiatric Association: Diagnostic and Statistical Manual IV Washington D.C., 1994

American Journal of Psychology, ?Premonitory Urges in TS?, 150:1, Jan. 93

Dreher, Nancy. ?What is Tourette?? Current Health, Oct. 1996, V.23, p.21

Shimberg, Elaine Fantle. Living with Tourette, NY, NY. 1995, Fireside.

The New Yorker, ? Moma when its jerking? , April 1995,V.71 p.34-36

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