Frequently Asked Questions about Williams Syndrome and the WSA
The diagnosis of Williams syndrome can lead to what seems like an endless stream of questions. The good news is that many parents have walked down the path you are now taking and can help answer your questions. It's likely that we even know the ones that are on the top of your list... and we've answered those for your here. If you have additional questions, please feel free to contact the national office (for questions about Williams syndrome) or your regional representative for questions about local resources and support.
Common Questions about Williams syndrome:
- What is the cause of Williams syndrome?
- What is the difference between Williams syndrome (WS) and Williams-Beuren syndrome (WBS)?
- How is Williams syndrome diagnosed?
- My child has not yet been diagnosed. Where should I go to have my child tested?
- Who should care for individuals with Williams syndrome?
- Who can help the families?
- I have read a lot about the musicality of children with WS. How will I know if my child is musical, and how can I enhance his musicality?
- Are medical problems frequent in Williams syndrome?
- Will my child have problems with anesthesia?
- I have read about many characteristics of Williams syndrome. Will my child experience all of these characteristics?
- Should I have my child evaluated for therapeutic interventions as an infant or toddler, or wait until he is of school age?
- Should I worry about future pregnancies, and the possibility of giving birth to another child with Williams syndrome?
- My child is now a teenager. Should I ask for a transition plan now or wait until he is ready to graduate from high school?
- Are college and work in my child's future, and what about independent living?
- My child has graduated from high school and wants very much to find a group of young adults that he/she can relate to, as well as share travel and social opportunities. Can you help?
- What is the outlook for adults with Williams syndrome?
- My child has just been diagnosed with Williams syndrome. How can the WSA help me?
- What are some of the current WSA activities?
- How is the WSA supported?
- How can I support the WSA?
- How can I get more information about the WSA?
A. The terms "Williams syndrome" and "Williams-Beuren syndrome" refer to the same syndrome. Drs. Williams and Beuren published papers within months of each other in New Zealand and Germany. Each described several patients with the same cardiovascular problem and a similar facial appearance. Williams syndrome is commonly used in the United States, while Williams-Beuren syndrome is widely used in Europe.
A. Genetics clinics around the country can order the FISH test for the Elastin Deletion and will be able to draw the blood and send it for testing. If there is not a genetics clinic in your area, the test can be ordered by any physician and sent to a reliable cytogenetics laboratory. Your doctor must give a precise order for: the FISH test for the deletion of elastin on Chromosome #7 to confirm or rule out Williams syndrome (standard chromosome testing will not detect the WS deletion).
A. The Williams Syndrome Association (WSA) is devoted exclusively to improving the lives of individuals with Williams syndrome. The association strives to locate individuals with the syndrome and their families and disseminate timely and accurate medical and educational information. It provides members with support through yearly regional conferences and social gatherings, quarterly newsletters and biennial conventions. The Williams Syndrome Association actively supports research into educational, behavioral, social and medical aspects of the syndrome.
A. Many children with WS clearly go through each day with a song (or a dance) in their hearts. Music seems to be at their fingertips, and in spite of problems in almost every other area they can be totally consumed by music of every type, and have great concentration for all things musical. When the children are very young, concentrate on exposing them to music of all kinds - look for a music therapist in your area to work with your child, enroll in a "Kindermusic" class etc. When your child is old enough developmentally to sit with a teacher for a period of time, you can begin to experiment with music lessons - Suzuki piano lessons are often a good place to start. Some music conservatories will offer 10 or 15 minute mini-lessons on a variety of musical instruments and offer suggestions about which instrument might be best for your child.
A. Williams syndrome can affect many different body organs. However, it is important to remember that no two individuals with Williams syndrome have exactly the same problems. Since some of the medical problems can develop over time, it is important that individuals with Williams syndrome receive ongoing medical monitoring and supervision. Despite the possibility of medical problems, most children and adults with Williams syndrome are healthy and lead active, full lives.
A. It is not likely that he or she will have problems. However, since a small percentage do have problems we suggest that all families approach procedures utilizing anesthesia with caution and do all you can to insure that the anesthesiologist and surgical team members understand the possible risks to individuals with Williams syndrome. Download and print the anesthesia reports found in the "I am a doctor" section of the website prior to any procedure and provide them to the specialists.
A. No, that is not likely. The characteristics listed here are known to be the most commonly seen in WS, but the list is not all inclusive, and all individuals with Williams syndrome do not have all of the characteristics. For instance, some individuals with WS do not have cardiovascular disorders, and others may not have sensitive hearing or be small in stature. Similarly, although most children with WS are overly friendly and very talkative, some are mostly non-verbal and quite reserved.
A. Your child should be enrolled in an early intervention program as soon as possible. Developmental testing should be performed to learn which therapies will benefit him or her, and how. Most young children with Williams syndrome receive OT, PT and Speech therapies.
A. Williams syndrome occurs spontaneously, not as the result of an inherited characteristic from either parent. Researchers believe that the incidence of a child with WS is about 1 in 10,000, and the incidence does not change with future pregnancies. Therefore it would be highly unlikely that you would have a second child with Williams syndrome.
A. It is very important to start transition planning early (at age 13 or 14). If you and your child feel that he or she may attend a post secondary education program, this is a good time to gather information about choices and appropriate preparation for specific programs. College may mean one type of high school program, getting ready for a job may mean another kind of curriculum is more appropriate. You will also want to begin looking for activities that focus on developing skills related to independence - either through school programs or programs offered by organizations concerned about young people with disabilities.
Agencies in localities throughout the country offer job-readiness programs, job training and placement. Enlist the services of your school district and local groups such as ARC, the Learning Disabilities Association and other groups that work with individuals with disabilities. Your state's Developmental Disabilities Council can also be a source of information about opportunities to help your child get ready for the working world.
A. We mentioned previously that there is a wide range of abilities among people with Williams syndrome. For some, college programming is not appropriate, while for others it can be quite rewarding. More and more, young adults with WS are attending college sponsored programs - primarily at local community colleges, but also at larger universities across the country that provide support for learning disabled students. The level of support available for students varies from very little (other than special testing methods and accommodations in work load) to quite pronounced. There is also an increasing number of post- secondary programs whose primary focus is independent living skills; practical academics (such as check balancing and money management); social development; and vocational preparation. The WSA can help you locate these programs.
Adults with WS are working at a variety of paid jobs such as, restaurant workers, office clerks, day care assistants, and "greeters" at major chain stores. Others work as volunteers in nursing homes, hospitals and day care program as well as many other alternatives.. Heart to Heart publishes periodic articles regarding agencies such as Vocational Rehabilitation and others that can be helpful in this process.
A. The vast majority of adults with Williams syndrome master self-help skills and complete academic and/or vocational school. They are employed in a variety of settings (ranging from supervised to independent jobs). Many adults with Williams syndrome live with their parents; others live in supervised apartments and some are able to live on their own.
- Advances awareness of Williams syndrome.
- Helps people with Williams syndrome reach their highest attainable goals through educational and enrichment programs such as camps, conferences and workshops
- Educates medical and educational professionals about Williams syndrome
- Maintains an extensive library of articles and tapes on Williams syndrome
- Provides information on the most up to date educational strategies and medical treatments for Williams syndrome
- Actively supports research on Williams syndrome
A. The Williams Syndrome Association is a 501(c)(3) non-profit, tax-exempt corporation. It derives support primarily from private donations and fund-raising projects.
A. The WSA employs a staff of just 4 full time employees. We rely on the support of our members and friends to do many things: provide volunteer help at events and conferences, co-ordinate local activities for families and help with fundraising events. Families and friends can also contribute financially to the Williams Syndrome Association in many ways. These include: general donations, tributes and memorials, corporate matching gift programs and planned gifts such as wills, trusts, life insurance, securities and/or appreciated property.