UI Health recognized for treatment of rare blood vessel disease

The Sturge-Weber Foundation has designated the University of Illinois Hospital & Health Sciences System a “Center of Excellence” for patients living with Sturge-Weber syndrome, a rare vascular disorder that can cause neurological abnormalities and glaucoma.

The syndrome is characterized by a large, red facial birthmark, called a port-wine stain. Patients are at elevated risk for progressive cognitive impairment, caused by calcification of tiny blood vessels in the brain.

“The blood vessels in Sturge-Weber syndrome are very leaky,” says Dr. Akira Yoshii, assistant professor of pediatric neurology and anatomy and cell biology in the UIC College of Medicine. “This leads to the coalescence of tiny calcium deposits on the internal surfaces of the blood vessels that grow larger over time.”

The calcifications, which look like railroad tracks on x-ray images, damage nerve tissue. Patients may suffer seizures and even strokes as a result of brain lesions. Severe headaches are another common symptom.

UI Health’s multidisciplinary Sturge-Weber team, which Yoshii co-leads with Dr. Jeffrey Loeb, the John S. Garvin Chair and professor of neurology and rehabilitation, includes neurologists, ophthalmologists, psychologists and other clinicians who evaluate and treat patients from birth through adulthood. UI Health may be unique among all U.S. centers recognized by the foundation in its ability to treat patients across the age spectrum.

“As patients with Sturge-Weber syndrome age, the symptoms and complications they face change, and so does the medical care they need,” said Loeb. “Here at UI Health, we have the expertise to be able to provide a continuum of high-quality care for these patients throughout their lives.”

Karen Ball, president and chief executive officer of the foundation, said the Center of Excellence designation will “let patients know that the University of Illinois at Chicago is a place where they can get comprehensive, expert care” and be able to participate in research in the foundation’s national network of collaborators.

At UIC, Loeb and his team will conduct clinical research into Sturge-Weber syndrome with a focus on developing new drugs to prevent and treat the brain calcifications that are associated with headaches and seizures.

The University of Illlinois NeuroRepository, a bank of neurological tissue samples from hundreds of patients with epileptic and other brain and nervous system disorders, will also be an integral part of the center. The NeuroRepository will help researchers identify genes and biomolecules linked to pathological and clinical findings, which may point to potential treatments.

The Sturge-Weber Foundation provides information, education and advocacy and support to adults and families of children with Sturge-Weber syndrome, capillary vascular birthmarks, Klippel Trenaunay and port wine birthmarks, and to healthcare providers. The foundation supports comprehensive clinical and basic research into the diagnosis and treatment of these conditions.