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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Progressive hemifacial atrophy


Other Names for this Disease
  • Hemifacial atrophy, progressive
  • Parry-Romberg syndrome
  • Romberg hemi-facial atrophy
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Your Question

I have a friend who is affected by progressive hemifacial atrophy. How is this condition treated? How can I locate doctors who are familiar with the management of this condition?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

How might progressive hemifacial atrophy  be treated? 

There is no cure and there are no treatments that can stop the progression of progressive hemifacial atrophy. Reconstructive or microvascular surgery may be needed to repair affected tissue. The timing of surgical treatment is generally agreed to be the best following exhaustion of the disease course and completion of facial growth. Most surgeons will recommend a waiting period of one or two years before proceeding with reconstruction. Muscle or bone grafts may also be helpful. Other treatment is symptomatic and supportive.[1]

Last updated: 10/2/2012

How can I find physicians who are knowledgeable about progressive hemifacial atrophy?

The Romberg's Connection has a list of doctors who are knowledgeable about progressive hemifacial atrophy. We encourage you to contact this group for more infromation about this service. 

The Romberg’s Connection
Email: rombergs@hotmail.com
Web site: http://www.therombergsconnection.com/

The World Craniofacial Foundation is developing International Teams that provide care for individuals with craniofacial disorders. Click here to access a listing of sites where these teams are located. 
Last updated: 10/2/2012

References