St. Luke’s inducted into Sturge‑Weber Foundation Clinical Care Network

While many people think of port wine stains as purely a cosmetic issue, the condition, which is associated with capillary malformations and other more serious conditions such as Sturge-Webber syndrome, can mean more serious problems. 

In the past, however, families of children with such birth marks would have to travel a great distance to get proper care for the condition. 

Now, such families officially have a world leader in the care of such conditions. 

St. Luke’s University Health Network has been formally induction into the Sturge-Weber Foundation Clinical Care Network.  

St. Luke’s is the 27th institution globally to receive the designation and is the first  healthcare provider in the Lehigh Valley – and only the second in Pennsylvania – to be recognized for this level of specialized clinical excellence.  

The St. Luke’s program is led by Dr. Andrew C. Krakowski, MD, who is the founding network chair of St. Luke’s Department of Dermatology and who serves as the lead point of clinical contact for the Birthmark Center at St. Luke’s. He began the treatment of Sturge-Webber syndrome and port wine stain birthmarks back in 2019. 

Krakowski said there was a real need. 

He noted that a local woman, Julia Terrell, who currently serves as director of community relations for the Sturge-Weber Foundation, had a child with the condition a few years earlier. 

“Back in 2016, the closest treatment for people with Sturge-Webber syndrome was in Hackensack, and so she up and left the Lehigh Valley so she could be closer to treatment,” Krakowski said. “We didn’t want those patients to have to drive far away. We wanted to help bring expertise to people in the Lehigh Valley.” 

Terrell said that having a member of the care network in her hometown is very important to her. 

“For years, families in the Lehigh Valley have had to travel long distances for specialized care—trips that are costly, time-consuming, and hard on patients,” Terrell said. “The expertise may have always existed, but families didn’t always know where to go or who to trust. Now, having a dedicated team close to home means families have clear direction, trusted care, and no longer feel alone in their journey. That truly warms my heart.” 

Krakowski  said the addition of St. Luke’s to the Clinical Care Network further strengthens the Sturge-Weber Foundation’s global mission to improve the quality of life and care for people with Sturge-Weber syndrome and associated port wine capillary malformations through ongoing collaboration with clinical partners and pioneers, education, advocacy, research, and patient and family support. 

He explained the significance of the condition, which he described as more than a birthmark. 

Port wine capillary malformations are a specific type of birthmark that are now known to be caused by genetic mutations within the skin itself.   

Occasionally, a port wine birthmark on the face may be associated with glaucoma and seizures, which is known as Sturge-Weber syndrome.  

Due to its multi-system nature, patients with Sturge-Weber syndrome often require a highly coordinated “medical home” to manage complex cutaneous, ocular, and neurological symptoms.   

“This formalizes some of the flow and process,” Krakowski said. 

For example, there are pediatric ophthalmologists with expertise in the area who can coordinate care on any eye-related symptoms a patient may have and work with other caregivers in the system so that the patient receives comprehensive care. 

Neurology can also help manage seizure activity and neurodevelopmental milestones. Radiology can contribute with advanced neuroimaging for monitoring vascular changes; and plastic surgeons can offer reconstructive support for structural complications arising from vascular malformations. 

St. Luke’s noted in a press release that Krakowski is a recognized leader in the use of advanced laser surgery to treat port wine birthmarks and associated vascular malformations in both children and adults.  His clinical experience is supported by a robust academic portfolio, including his role as senior editor of the definitive textbook, Pediatric Procedural Dermatology and several recent peer-reviewed publications focused on optimizing laser parameters and multidisciplinary protocols for managing port wine birthmarks.  

 He is the only board-certified pediatric dermatologist in the Lehigh Valley, representing one of more than 40 pediatric specialties available through St. Luke’s Children’s Hospital.