Parry-Romberg Syndrome | Diagnosis & Treatments

How is Parry-Romberg syndrome diagnosed?

Doctors at Boston Children’s Hospital are able to diagnose this disease based on:

  • a detailed review of your child’s complete medical history
  • an extensive physical examination, looking for signs of progressive loss of skin, fat, muscle, and bone
  • specialized tests, like a CT scan or MRI (a painless imaging test that takes detailed pictures of structures inside the body)

How we care for Parry-Romberg syndrome

Because Parry-Romberg syndrome may involve the lip, nose, mouth, and ears, it can affect a child’s hearing, feeding, speech, and dental functions. At Boston Children’s Hospital, our dedicated and knowledgeable team of specialists from several disciplines provides you and your child with the care and expertise necessary to treat this rare and complex condition.

Treatment typically involves surgery. The Cleft and Craniofacial Center at Boston Children’s is one of the largest and most experienced pediatric plastic and oral surgery centers anywhere in the world.

Parry-Romberg syndrome and reconstructive surgery

Our world-renowned surgeons perform very precise, complex reconstructive surgeries to treat Parry-Romberg. These surgeries are diverse, but not curative. Our surgeons usually recommend postponing surgery until the condition has stopped getting worse and has reached an inactive phase. This allows for the best treatment and reconstruction. The surgery (or surgeries) range across a large spectrum, but may include:

  • moving soft tissue and fat from other parts of the body to areas of need
  • more extensive reconstruction for boney deformity using hardware or grafts

Our surgeons will discuss specific options with you and your child in order to personally tailor the treatment. Since every patient’s case is unique, the surgical approach may vary quite significantly to treat your child’s condition.