WHAT IS WILLIAMS SYNDROME?


WHAT IS WILLIAMS SYNDROME?" is the first question people ask when they find out that my friend's daughter has this. Most people have never heard of this affliction or ever knew anyone who had it.

On this page you will find links to Williams Syndrome organizations, and links to clinical reports. You will also find information on:

  • Williams Syndrome –
    A Blessing

  • Your Response


  • WILLIAMS SYNDROME VIDEO




    Williams Syndrome affects 1 in 8,000 to 20,000 births. It is caused by a deletion of 26 genes on the #7 chromosome. This is a genetic mutation that occurs during the development of the egg once it has been fertilized. This is a very simple explanation for what is a very complex issue.

    People with Williams have an early mortality rate. Many don't live beyond the age of 50 due to heart conditions that were present when they were born.


    As you can imagine, the missing genes cause many problems for youngsters and these problems continue into adulthood. In fact, people with Williams Syndrome have constant health problems.


    WILLIAMS SYNDROME CHARACTERISTICS

    WHAT IS WILLIAMS SYNDROME? Williams Syndrome has very distinct characteristics. Facial features are the most obvious. However, at the same time you notice the facial features you will immediately see some of the personality traits.



    FACIAL FEATURES

    Wide mouth

    Widely spaced teeth

    Full lips

    Puffiness around the eyes

    Full cheeks

    Long neck

    Hoarse voice

    Curvature of the spine

    PERSONALITY TRAITS

    Will talk to anyone without fear that danger may be present.

    Loves helping others

    Feels for others when they hurt.

    Remembers names and faces.

    Has great expressive language skills.

    Loves music.

    People with Williams are impulsive. They also have a failure to concentrate. Like autistic children, many WS children will focus on one topic at a time. You may even catch them staring into space.


    MEDICAL CONCERNS


    WHAT IS WILLIAMS SYNDROME? Williams Syndrome is a condition that causes many medical concerns. Due to growth abnormalities, people with Williams Syndrome have short stature and usually fall below the 3rd percentile on growth charts.


    According to Dr. Aneal Khan, a researcher for Williams Syndrome, a moderate hearing loss occurs in adolescents and adults. Other concerns are:

    • Congenital heart disease

    • Hypertension

    • Recurring ear infections in children, which eventually leads to the moderate hearing loss as they get older.

    • Increased urinary frequencies; daytime wetting

    • Glucose tolerance, diabetes

    • Hypothyroidism

    • Severe dental disease

    • 50% of all WS individuals have some type of eye problems

    For a more detailed clinical report look at this report at Medscape.


    To see a diagram of how Williams Syndrome affects the heart, go to the Children's Heart Institute website.


    INTELLIGENCE

    WHAT IS WILLIAMS SYNDROME? Because 26 genes of the #7 chromosome is missing, an individual will be intellectually challenged.


    People with Williams will vary in their degree of intellectual disability (once known as retardation); from severe mental retardation to average intelligence. The norm is usually between a mild to moderate level of intelligence. Almost all have developmental delays and learning disabilities.

    Very few adults with Williams Syndrome are able to live independently. If they do, then someone needs to be close by to check on them. Because people with Williams Syndrome are so trusting and friendly, it is easy for others to take advantage of them. The video below shows what happened to one woman when she trusted a male "friend".


    EDUCATION AND SCHOOLING


    The intellectual difficulties usually impairs these students from doing well in school. Handwriting is difficult for most Williams Syndrome individuals. Learning deficits such as AD/HD often hamper the student's ability to focus at school.


    Young adults entering high school should have a plan that will help them learn life skills. If possible, these skills would not only focus on daily living skills but teachers and advisers should help the Williams Syndrome individual to attain a job skill.


    SOCIAL SKILLS


    WHAT IS WILLIAMS SYNDROME?
    Williams Syndrome affects how a person will interact with others. Although children and adults are very friendly, they lack communicative and social skills. After the initial hello and my name is..what is your name, they fumble with the ping pong give and take of a conversation. Because they lack these societal skills, many grow up very isolated.


    Outside of family and school, children with Williams Syndrome lack friends and extracurricular activities. As children turn into young adults, caretakers have to watch for signs of depression; just another concern in the long list of many.


    Other signs that a individual is not coping socially is that they may develop anxiety, panic attacks and even phobias. All of these of course can turn into depression.


    FUTURE POSSIBILITIES
    MUSIC! MUSIC! MUSIC!


    Williams children and adults have an uncanny ability to remember songs They have a sense of rhythm one wouldn't think a person with this condition would have.



    In fact, some individuals have a savant like musical abilities as shown with this video.

    So if you asked Gloria Lenhoff "WHAT IS WILLIAMS SYNDROME?" she would say, "Music, Music, Music."



    BEHOLD THE BEAUTY

    Most Williams Syndrome individuals are not artists. In fact, because they have trouble with spatial relationships, their handwriting is illegible. If you ask a WS person to draw a bike, you may get a long line across the page and maybe some circles. You wouldn't know what it was unless they told you.

    Take a look at these two pictures. Both are drawing of a bicycle. One is done by an 11 year old with Williams Syndrome (left). The other drawing is done by an 11 year old with Downs Syndrome (right). The 2 contrast shows that a person with WS has no spatial conception.


    But like any other disability, this is not necessarily true for every Williams individual. If you asked Jenny Lu "WHAT IS WILLIAMS SYNDROME", she would say it is beautiful pictures that she and her mom draws.


    Jenny is 23 years old. Her mother is an artist and has been working with Jenny Lu since she was a tot. Although Jenny's pictures are not sophisticated, they are simple, sweet and colorful.


    Jenny Lu is using her talent to raise awareness about Williams Syndrome.


    INTERVENTIONS


    Since there is no cure for Williams Syndrome, intervention becomes the mode operand i. The interventions would be the ones already discussed above. Let me summarize them here.


    • Make sure the child has regular checkups with the heart doctor and others if and when other problems occur.

    • Regular visits to the dentist are a must. Unhealthy teeth can lead to serious infections and other diseases.

    • Make sure there is a workable IEP at school so the individual can get the necessary educational training s/he desires.


    WILLIAMS SYNDROME - A BLESSING


    For parents of a child with this condition they would say it is a condition that produces a very loveable child; one that embraces life and wants to help everyone.


    Some parents might even say Williams Syndrome is a curse and a blessing. A curse in the sense of all the medical issues but a blessing because of the child is a Gift from God.


    YOUR RESPONSE

    Do you need a place to rant and rave? A place where you can connect with other moms (or dads) who have a child with Williams Syndrome.

    HERE IT IS! A place you can share tips, RANT (vent frustrations) or RAVE (brag on yourself, your family, friends or child). HOWEVER, the theme here is: WILLIAMS SYNDROME. Keep your comments to that topic.


    You may want to check out this mom's blog. She has been keeping a blog from the time her daughter was born and they knew she had Williams Syndrome.


    Have all of your questions been answered to "WHAT IS WILLIAMS SYNDROME?" Do you have a story to share about a WS child or adult? Share their story with us! Fill out the form below.

    WHAT'S YOUR STORY?

    Everyone has a story to tell. Some stories are tragic, but others can learn from them. Some of your stories are success stories; those are encouraging for the struggling parent and child. Please consider sharing your story with all of us.

    If your child would like to submit a letter about his or her reading difficulties or academic struggles, please let them. I want this to be a place where everyone has a voice!

    Just as adults learn from others' testimonies and struggles, children will benefit from listening to other children's successes and struggles.




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