Parkes Weber Syndrome | Research and Innovation

The clinicians and scientists in Boston Children's Hospital's Vascular Anomalies Center (VAC) strive to improve the care of patients with vascular anomalies like Parkes Weber Syndrome (PWS) by understanding the biology behind them.

Battling PWS at its source

PWS is caused by errors that occur when blood and lymphatic vessels are forming.

Our investigators are probing the genes and molecules that regulate the formation and growth of blood/lymphatic vessels. We hope that understanding the genes that control these molecular events will result in new therapies for vascular malformations.

The VAC conducts research that may lead to the development of new, more effective therapies and perhaps ultimately result in ways to prevent these anomalies. The VAC has generated an extensive case database on vascular anomalies, including many cases of PWS. Using this database, we are actively evaluating the best therapies for PWS and studying long-term outcomes after PWS. As our database grows, it helps to shine more light on this rare condition.

Surgical treatment

Traditionally, debulking — a surgical procedure where many of the abnormal vessels and some of the child’s overgrown tissue is removed — has not been a standard treatment for children with PWS. However, for more than 15 years, surgeons at Boston Children's Hospital have been performing large-scale debulking procedures to help children whose overgrown legs have left them wheelchair-bound.

We have developed a team approach to performing debulking procedures. The pre-surgical preparation and post-surgical care can be critical to the success of the surgery.