Williams syndrome

We searched PubMed, the database of published medical literature, as well as medical websites and the websites of support and advocacy groups for a connection between intraductal papillomas and Williams syndrome. However, we were not able to find any study, case report or resource suggesting women with Williams syndrome were at an increased risk for intraductal papillomas.

This however does not mean there is not a connection, only that such a connection has not been published. We will provide resources below for you to explore your question further.

In addition to kidney and heart problems, some of the medical issues which may develop as people with Williams syndrome age include:^[1]

• Hearing loss (including build up of wax)
• Hypercalemia
• Hypothyroidism
• Diabetes
• Weight gain (about 50% remain thin however)
• Dental problems (need help at home with dental care)
• Gastrointestinal problems
  • Abdominal pain
  • Constipation
  • Diverticulitis
• Anxiety disorders
• Possible accelerated aging (premature graying of hair)
• Possible accelerated cognitive decline
• For more details see: Adult Medical Issues

Please note that people with Williams syndrome may also have difficulties with anesthesia. For more information see: Anesthesia Concerns

Nonprofit support and advocacy groups can offer a way to connect to others who may have similar experiences. Information gathered from affected members of these groups has sometimes changed the direction of research by bringing to light commonalities that were missed because few physicians actually saw many affected people with the condition or did not ask the right questions to make the discovery. In addition, members of the Medical Advisory Boards may be aware of unpublished information and private ongoing research or may become interested in pursuing a research interest brought to their attention by the affected members of a group. The Information Center provides the names of organizations and researchers for informational purposes only and not as an endorsement of services.

The Williams Syndrome Foundation has a very active group for adults with Williams syndrome and their families. They also have a registry where they collect information about people with Williams syndrome so more can be known. Their website has information about medical issues and research as well as ways to connect to other families. On the Williams Syndrome Association website, Dr. Barbara Pober is listed as a medical researcher who is very interested in the medical issues faced by those with Williams syndrome as they age. 

Williams Syndrome Association 
570 Kirts Blvd
Suite 223
Troy, MI 48084-4156
Toll-free: 800-806-1871
Telephone: 248-244-2229
Fax: 248-244-2230
E-mail: info@williams-syndrome.org
Website: http://www.williams-syndrome.org