Parry-Romberg Syndrome in Children

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What is Parry-Romberg Syndrome?

Parry-Romberg syndrome, also call Romberg syndrome or hemifacial atrophy,  is a condition where the tissue of one side of the face gradually wastes away. Over time, the soft tissue (muscle and fat) gradually shrinks, the facial bones may change, and the skin may become thin. The severity of this atrophy can vary widely between patients, ranging from mild to severe. Some children and adults with Parry-Romberg syndrome also have headaches, and seizures can also infrequently happen. The signs of Romberg syndrome overlap with another condition called "linear scleroderma" and the line between the two is not always clear. The cause of Parry-Romberg syndrome is not known.

Parry-Romberg syndrome is thought to affect roughly one in 250,000 people, but the true incidence is not known because the condition is often misdiagnosed.

Why Choose Boston Children’s Hospital for Parry-Romberg Care

Families seeking the very best care for their child come to the Craniofacial Program at Boston Children’s for our:

  • Nationally recognized care: U.S.News & World Report ranks Boston Children's Hospital higher in more specialties—including neurosurgery—than any other children's hospital in the country.
  • Surgical expertise: Very advanced surgical techniques and precision is required to treat this disease. Our surgeons are world renowned for treating complex craniofacial anomalies. Learn more about Parry-Romberg treatment.
  • Research and innovation: Our clinicians are involved in research that moves us closer to a better understanding of—and treatment for—all deformities of the head and face. Learn more about our craniofacial research.
  • Customized treatment: Our team will develop a customized treatment plan that meets your child's physical, emotional and social needs—one that involves you and your family at every step of the treatment, from diagnosis to craniofacial surgery. Learn more about our approach to craniofacial care.
  • Team approach: Our Craniofacial Program includes some of the world’s most experienced neurosurgeons, plastic surgeons, oral and maxillofacial (jaw) specialists, dentistry professionals, psychologists and social workers—all working together to address the many needs of your child and your entire family. Meet our craniofacial team.

Make an Appointment

For an appointment with the Cleft and Craniofacial Center, more information or to obtain a second opinion for your child, please call us at 617-355-6309 or email samantha.hall@childrens.harvard.edu.

International Patients

For families residing outside of the United States, please call Boston Children's International Health Services at +01-617-355-5209.

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944

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