The pediatric craniofacial specialists at the North Carolina Cleft and Craniofacial Center coordinate their services to provide comprehensive care for children with Parry-Romberg syndrome and other craniofacial differences. We evaluate each child’s needs and create a unique treatment plan based on the latest research and technology and our years of experience. Parry-Romberg syndrome, also known as progressive hemifacial atrophy, is a rare disease marked by progressive deterioration and shrinking of the skin and facial tissues, usually affecting one side of the face. The cause of Parry-Romberg is unknown and appears to occur randomly.

Symptoms

Symptom severity and the progression of symptoms vary greatly from person to person. Facial changes may begin slowly and become more severe over time, typically starting with the midface, the cheek, or the area between the lip and nose and then progressing to include the eyes, brows, ears, and the lower jaw and angle of the mouth. Changes in skin color can also occur. The eyes and cheek may appear sunken over time. The tongue, roof of the mouth and gums may also be involved. The left side of the face is more likely to be affected than the right, and Parry-Romberg syndrome is more common in girls than in boys.

Neurological symptoms accompany Parry-Romberg syndrome in some cases. Such symptoms may include migraine headaches, seizures, and facial sensations such as prickling, burning, or pain.

Diagnosis

Children with Parry-Romberg syndrome typically experience the progressive loss of skin and facial tissue starting at age five. The period of degradation can last for two to 10 years, followed by a stable phase. Diagnosis is based on a child’s symptoms, family and medical history, physical exam, and tests, such as MRI. Our team of pediatric specialists is experienced in evaluating symptoms and monitoring disease progression over time. Diagnosis and treatment are guided by the latest research and recommendations.

Treatment

At the North Carolina Cleft and Craniofacial Center, our team includes pediatricians, surgeons, plastic surgeons, dentists, eye doctors, dermatologists, neurologists, and physical, occupational, and speech therapists, all working together to systematically and comprehensively plan and implement each child’s treatment. We are here for your child from initial consultation to treatment an aftercare.

Doctors will choose to delay surgical treatment until the disease is stable, possibly after full development of the skull and face. Our specialists use photographs to monitor disease progression over time and may explore several treatment options, including:

  • Injection of fat
  • Skin grafting
  • Tissue grafting
  • Implants

Additional procedures may be used to treat dental or visual problems, and medications may be helpful for patients experiencing seizures or other neurological effects.

Aftercare

Following treatment for Parry-Romberg syndrome, children receive continued supportive services, including close monitoring and occupational, speech, and physical therapy.