Diagnosing Parry-Romberg Syndrome

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Contact the Cleft and Craniofacial Center

Parry-Romberg syndrome generally first appears in children between ages 5 and 15. The deterioration of muscle (atrophy) may continue for variable lengths of time. The average length of atrophy progresses for 2-10 years, when it eventually reaches an inactive, stable phase.

How is Parry-Romberg Disease 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 or MRI (a painless imaging test that takes detailed pictures of structures inside the body)

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.

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- Sandra L. Fenwick, President and CEO

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
For Patients: 617-355-6000
For Referring Providers: 844-BCH-PEDS | 844-224-7337