Parry Romberg Syndrome: 7 Things Parents Should Know About This Childhood Disease

Jeanne Sager
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hiding faceParents and doctors are both doing the happy dance today. Scientists seem to have found a way to treat Parry-Romberg syndrome, a rare childhood disease that can take your normal kid's face and make it seemingly melt away. The autoimmune disease has always been considered incurable and untreatable. It's a modern miracle!

But after joining the cheers for Christine Honeycutt, the 11-year-old girl who underwent surgery and seems to be "cured" of Parry-Romberg, I had bigger questions on my mind. Like, what the heck is Parry-Romberg Syndrome? And more to the point, what do I need to know so I don't have to wait 2 1/2 years like the Honeycutts to get it properly diagnosed? 

There are a few must-know facts for parents about this scary disease:

1. As described by the National Institutes of Neurological Disorders and Strokes, it's "characterized by slowly progressive deterioration (atrophy) of the skin and soft tissues of half of the face (hemifacial atrophy), usually the left side."

2. The top three initial signs that your child could be a Parry-Romberg sufferer include skin discoloration (brown, mottled, darkened), a facial indentation (atrophy, dent), or a white spot or streak on the skin. As the disease takes hold, kids can suffer from seizures and facial pain.

3. It's an autoimmune disease, much like lupus or type 1 diabetes. With autoimmune diseases, the immune system essentially attacks your body because it can't differentiate between healthy body tissue and antigens.

4. More girls than boys suffer from Parry-Romberg, but overall numbers of the afflicted remain fairly low. That's why it's classified as one of the rare or "orphan" diseases -- diseases that affect fewer than 200,000 people in the United States. Statistically, your kids are at higher risk of contracting mono or developing diabetes.

5. It generally strikes between the ages of 5 and 15. So a healthy toddler doesn't mean anything in the scheme of things.

6. Your doctor may describe it as Progressive Hemifacial Atrophy.

7. Although there's technically no treatment or cure, the surgery done on Christine Honeycutt provides hope for kids. Also good for parents to know? Cases vary in severity -- it can take anywhere from 2 to 10 years for atrophying to stop, and some kids never suffer more disability than some cosmetic defects.

Are you familiar with Parry-Romberg Syndrome?


Image via Pink Sherbet Photography/Flickr

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