What is Williams Syndrome?
Characteristic facial appearance: Broad brow, bitemporal narrowness, periorbital fullness, a lacy iris pattern, strabismus, short nose, full nasal tip, malar hypoplasia, long philtrum, full lips, wide mouth, malocclusion, small jaw, and prominent earlobes are observed at all ages. Young children have epicanthal folds, full cheeks and small, widely spaced teeth, while adults typically have a long face and neck, accentuated by sloping shoulders, resulting in a more gaunt appearance.
- Delay in achieving developmental milestones
- Delay in speech and language development
- Dental problems (poor enamel, cavities)
Who should I consult if I suspect?
You can ask your primary care provider to order the FISH test, but, the best way to proceed is to see a clinical geneticist. He or she can perform a complete evaluation, discuss the testing, and arrange for the FISH test to be conducted.
Treating or Treatments?
There is no “cure” for WS, but, there are ways to treat the various problems associated with the syndrome. There is no standard course of treatment for this very complex and uncommon disorder. People with WS require evaluation and subsequent monitoring by multiple specialists, including regular cardiovascular monitoring. Physical, Occupational and Speech/Language therapy is also recommended. Treatments are based on each individual symptom.
What are the first steps to take?
The first step is to have a thorough cardiovascular evaluation. All systems in the body should be evaluated since no two individuals with Williams Syndrome are alike. One of the most commonly cited pieces of advice for parents of a newly diagnosed child is to find other parents who have been through the process. Visiting a developmental pediatrician can also be helpful in sorting through all the different therapy options.
Please list info on your organization (including links)
The Williams Syndrome Family of Hope, Inc. is a grassroots, not for profit, organization that was formed by families for families. Our mission is to provide support, resources, education and financial resources to those affected by Williams Syndrome. Spreading awareness is the key. Educating physicians, therapists and educators is imperative.
We are “Differently Abled, Beautifully Perfect.” Hope is an Open Heart.
Find us on Facebook at https://www.facebook.com/Williams-Syndrome-Family-of-Hope-285994588089936/
For more information, you can email us at firstname.lastname@example.org
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