Frequently Asked Questions about Williams Syndrome

Everyone has questions following a diagnosis of Williams syndrome for their loved one. We are here to help. The WSA community consists of thousands of families who have traveled the journey that you are now beginning. Each of our journeys looks a little different, but it is rare that someone hasn’t faced one or more (or even most) of your challenges.

We've tried to anticipate many of your immediate general questions here. If you have additional, more specific questions, please feel free to contact us.

QUESTIONS ABOUT THE DIAGNOSIS OF WILLIAMS SYNDROME

Should I have my child evaluated for therapeutic interventions? When is the best time to have the evaluation completed?

Your child should receive therapeutic interventions as early as possible. Young children should be enrolled in an early intervention program, and developmental testing should be performed to learn which therapies are needed, as well as the frequency of therapeutic intervention. Most young children with Williams syndrome receive occupational therapy, physical therapy and speech therapy. Many also benefit from music therapy, vision therapy, and hippotherapy.

Do I need specialists to help me care for my child with Williams syndrome?

You do not need specialists to help with the general care of your child. However, given the complex nature of many of the problems found in individuals with Williams syndrome, many health and educational professionals will most likely be involved in their care.

Regular monitoring for potential medical problems is necessary and should be done by a physician familiar with the broad array of problems that can be seen in Williams syndrome.

The expertise of developmental psychologists, speech and language pathologists, physical and occupational therapists, etc. who are familiar with Williams syndrome is also recommended. Multi-disciplinary Williams syndrome clinics, with professionals available in all of these areas, can be an effective adjunct to local resources. When a Williams syndrome clinic is not close by, families are encouraged to seek out professionals in their communities and provide them with the information found on this website to help them learn about Williams syndrome.

Should I worry about future pregnancies, and the possibility of giving birth to another child with Williams syndrome?

Williams syndrome occurs spontaneously, not as the result of an inherited characteristic from either parent (unless the parent has Williams syndrome). Researchers believe that the incidence of a child with WS is about 1 in 7,500, 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. If a parent has Williams syndrome, the possibility of giving birth to a child with WS is 50%, and that does not change for future pregnancies.

What is the cause of Williams syndrome?

Williams syndrome is caused by the spontaneous deletion of 26-28 genes on one copy of chromosome #7. The deletion occurs at the time of conception and is not caused by anything parents did or did not do either before or during pregnancy.

What is the difference between Williams syndrome (WS) and Williams-Beuren syndrome (WBS)?

There is no difference. 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 the name commonly used to describe the syndrome in the United States, while Williams-Beuren syndrome is widely used internationally.

How is Williams syndrome diagnosed?

The clinical diagnosis of WS can be confirmed by blood test. There are two tests used to confirm WS – a microarray analysis or a FISH test. The FISH test looks specifically for deletion of elastin (the “marker gene” for WS). The microarray detects the full length of the deletion on chromosome #7 and can determine if an individual’s deletion is the common size of 26-28 genes or a variation (either smaller or larger). Each of the tests is highly reliable (greater than 95%).

Many individuals with Williams syndrome remain undiagnosed or are diagnosed at a relatively late age. This is of concern since individuals with Williams syndrome can have significant and possibly progressive medical problems. When the characteristics of Williams syndrome are recognized, referral to a clinical geneticist for further diagnostic evaluation is appropriate.

My child has not yet been diagnosed. Where should I go to have my child tested?

Request a referral to a geneticist from your child’s physician. If WS is suspected following a clinical evaluation, the geneticist will draw a small sample of 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”, or a microarray analysis. (Standard chromosome testing will not detect the WS deletion.)

QUESTIONS ABOUT MEDICAL ISSUES COMMON IN WS

The website lists many characteristics of Williams syndrome. Will my child experience all of these characteristics?

No, that is not likely. In fact, we don’t know of anyone who has all the possible characteristics of WS. The characteristics listed here are known to be the most commonly seen medical characteristics of WS. There are additional characteristics that are not seen as often, and every individual with Williams syndrome will have their own unique “list” of characteristics that they experience. By far the most widely seen characteristics are the overly friendly and endearing personality, the similar facial characteristics and a love of music.

Are there special risks associated with treatment or hospitalizations?

Yes, individuals with Williams syndrome have a higher risk than others for adverse reactions to anesthesia. It is most likely that there won’t be any problem at all. However, since a small percentage of those with WS can have severe adverse reactions, we suggest that all families approach procedures utilizing anesthesia with caution and do all you can to ensure that the anesthesiologist and surgical team members understand the possible risks to individuals with Williams syndrome. Download and print the anesthesia guidelines and reports prior to any procedure and provide them to the hospital care team.

Is it important to have doctors who are WS experts? How do I find them?

It is always a plus to have doctors who are experts in Williams syndrome for your child. Unfortunately, Williams syndrome is rare, and there are not nearly enough WS experts. In general, individuals with WS are quite healthy. A good pediatrician or family practitioner who follows the AMA guidelines for WS to ensure that the correct testing is done annually and as prescribed will be able to provide excellent care for your child. When specialized treatment is needed, a WS expert is more important. There are currently 9 WS Clinics in the US. The clinics provide one-time evaluations, regular care (for those who are close by), and the specialized care that may be needed periodically.

Are medical problems frequent in Williams syndrome?

Yes, but the number and the severity of problems varies greatly among individuals. Many different body systems can be affected and since some of the medical problems can develop over time, it is important that individuals with Williams syndrome receive ongoing medical monitoring and supervision. Your physician should follow the guidelines provided by the American Medical Association. Despite the possibility of medical problems, most children and adults with Williams syndrome are healthy and lead active, full lives.

QUESTIONS ABOUT EDUCATION FOR A CHILD WITH WILLIAMS SYNDROME

What educational program will be best for my primary school age child?

Children with WS are individuals with a wide range of cognitive abilities. There is not a specific program that works best for everyone. However, our education consultant and professional advisors have worked hard to define the learning profile for students with Williams syndrome. Teachers can effectively utilize the profile to help their students with WS access grade-level curriculum and experience great success.

An additional key to successful programming for your child lies in parent-professional collaboration. It is important to build a "team" of support for your child, and you as a parent should be an integral member of the team, creating a program that builds on and enhances your child's strengths and abilities. You can provide both vital information from personal knowledge of your child and the knowledge gained from the WS experts who have collaborated with and advised the WSA, to help ensure the team is making the right decisions for your child.

Will my child be in a classroom with his or her peers without WS?

Yes, it is highly likely that your child will be in a classroom with his peers. The length of time each day that students with WS are in a regular classroom, however, varies. Many are fully included, while others spend their day in a mix of regular education and more specialized learning environments.

Why is it important to have a “Vision” for my child when he or she is still very young?

A vision statement is like a roadmap. If you don’t know where you are going, how do you define your path? We all have a “vision” for our children, and it’s important that your child’s educational team knows what that vision is to help ensure that your child will have the best possible chance to achieve success.

Will my child need to attend a special school?

Children with Williams syndrome DO NOT require a special school, and in fact can realize success in a variety of different educational environments. Some families elect to have their children attend private schools specializing in education for students with cognitive challenges, others choose charter schools or religiously based programs, and a percentage are home-schooled. The most widely attended schools, however, are community public schools. Success can be achieved at each of these program types as long as the staff understands the learning profile for a student with WS and makes the proper accommodations to help the student learn.

QUESTIONS ABOUT TRANSITION AND ADULTS WITH WILLIAMS SYNDROME

What is the outlook and life expectancy for adults with Williams syndrome?

The vast majority of adults with Williams syndrome are productive members of their communities, living and working in a variety of settings. Some medical and neurodevelopmental issues such as diverticulitis, diabetes, anxiety and depression can increase in adulthood and must be closely monitored. It is also important to help adults with WS maintain an active lifestyle, engaged with their peers. In general, adults with WS can lead healthy, happy lives. Precise life expectancy for those with WS is unknown. We do know that the elastin deletion causes early aging, and depending on general health and pre-existing conditions, life expectancy may be somewhat lower than in the general population.

Are college and work in my child's future, and what about independent living?

There is a wide range of abilities among people with Williams syndrome. Fortunately, there are also a growing number of transition and post-secondary options for individuals with differing abilities, making college or college-like programming possible for many. The level of support available for students varies among the programs. Many programs focusing on independent living skills, practical academics (such as check balancing and money management), social development and vocational preparation rather than traditional academics also provide a college-like experience.

Adults with WS are entering the workplace with greater frequency and in a variety of paid and volunteer positions, with most working an average of 16 -20 hours per week. State-run agencies such as DDS, Vocational Rehabilitation and others as well as private organizations such as Creative Spirit and others can be helpful for both job training and placement.

Just as there are many options for work, there are many different supported living options that can be suitable for adults with WS. Some adults with WS are able to live completely on their own, with or without, a roommate. Others are living semi-independently (usually with a roommate) in a supervised apartment complex where they receive minimal to moderate amounts of support. Still others live in group homes with other adults with a variety of disabilities, and some prefer to stay at home with their parents. The choice for an appropriate living environment is often influenced by the availability of public transportation and proximity to the adult’s workplace. Local Arc groups, State Developmental Disabilities Councils and other disability-related groups can help locate local agencies that can help to prepare your son or daughter for independent living and work with your family to find the supported living option that works best.

My child graduated from high school and wants to find a group of young adults he/she can connect with. Can you help?

The WSA’s Adventure Seekers group helps young adults find life-long friends among their peers with Williams syndrome. Annual 3 to 4-day trips are arranged and regular calls are arranged in addition to meetings at local social and educational events. WSA partners with Camp Blue Skies to host a 5-day camp program for adults each spring and parent volunteers in many areas also work to help initiate and coordinate adult social groups that meet informally on a pre-arranged schedule to share time together. The WSA also provides information about community groups that offer chaperoned trips for young adults, and links parents who have volunteered to host travelers with young people who want to travel. Social activities are also available locally through your local Arc and community recreation programs, etc.

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?

It is very important to start transition planning early (no later than 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 specializing in helping individuals with cognitive challenges become autonomous, improve executive functioning and daily living skills, etc.

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 The 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.

What is transition? Why is it an important consideration?

Transition is used to describe the movement between programs. Your child will transition for pre-school to kindergarten; primary school to middle/high school and high school to post-secondary and life-skills programs. The transition out of high school is very important. It sets the stage for an individual’s future as an adult, helping to ensure they have the best classes and educational program to prepare them for their goals for college, employment and independent living.

QUESTIONS ABOUT THE WILLIAMS SYNDROME ASSOCIATION

What are the best ways to contact the Williams Syndrome Association?

Call us toll-free at 1-800-806-1871, send an email to info@williams-syndrome.org, message us on social media, or write to us at:

Williams Syndrome Association

243 Broadway #9188

Newark NJ 07104

How can I support the Williams Syndrome Association?

The WSA relies on the support of our members and friends to help in many ways: providing volunteer support at events and conferences, coordinating local activities for families, helping to host and support fundraising events, and providing specialized assistance based on personal expertise.

Families and friends can also contribute financially to the Williams Syndrome Association in many ways, through general donations, tributes and memorials, corporate matching gift programs and planned gifts such as wills, trusts, life insurance, securities and/or appreciated property.

How is the Williams Syndrome Association funded?

The Williams Syndrome Association is a national 501(c)(3) non-profit, tax-exempt corporation. More than 90% of our funding comes from private donations and fund-raising events such as the annual Walks for Williams.

What are some of the current activities of the WSA?

The WSA provides educational conferences for both professionals and family members, annual week-long camp programs for children ages 6-21, and approximately 100 social events throughout the country. “Walk for Williams” events help increase awareness of WS and funding for WSA programs, and a biennial national convention provides education and enrichment for families. Additional programs include scholarships and financial aid, funding for critical research studies on WS and much more.

My child has just been diagnosed with Williams syndrome. How can the WSA help me?

The WSA is a community of individuals with Williams syndrome, their parents and the professionals who work with them. The WSA can provide emotional and professional support, resources and programs as well as a step by step guide for getting started to locate the resources in your community that can help along the way.

I see a great deal of information and support on social media. Isn’t that enough?

The information you can find on social media and virtual connections you can make on social media are very helpful. However, you have no way to know if the information you are seeing is the most recent and most accurate information available. The WSA works closely with WS experts in every field to ensure that the information we publish and post, is both accurate and up to date. Virtual connections with other families are also great, but they cannot replace face-to-face opportunities to meet and network with other parents.

How does the Williams Syndrome Association (WSA) help families?

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 regional conferences and social gatherings, electronic newsletters, published resources and biennial conventions. The Williams Syndrome Association actively supports research into educational, behavioral, social and medical aspects of the syndrome.

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