National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Progressive hemifacial atrophy

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I developed progressive hemifacial atrophy while I was pregnant. Can progressive hemifacial atrophy be triggered by pregnancy? Is it related to polycystic ovarian syndrome or insulin resistance?

The following information may help to address your question:


Can progressive hemifacial atrophy be triggered by pregnancy?

While the cause of progressive hemifacial atrophy is unknown, medical researchers believe there are many different causes. However, in the available recently published medical studies and reviews, pregnancy is not listed among the proposed causes.[1][2][3][4]

We were able to find only one published case reporting progressive hemifacial atrophy beginning in a woman during pregnancy.[4]  Since the cause of progressive hemifacial atrophy is still not well understood and the condition is rare, it would be too early to state that there is not a connection.  For instance though you developed progressive hemifacial atrophy while you were pregnant, your doctor did not publish the case, so it is difficult to predict how often this has occurred. 
Last updated: 4/29/2016

Could progressive hemifacial atrophy be related to polycystic ovarian syndrome and insulin resistance?

We were not able to find any published medical case reports or studies linking polycystic ovarian syndrome and/or insulin resistance with progressive hemifacial atrophy. This however does not mean that there is no connection, just that at present, such a connection has either not been noticed or published.
Last updated: 4/29/2016

What other resources may help me explore my question further?

Nonprofit support and advocacy groups can offer a way to connect to others who may have similar experiences Information gathered from affected members of different groups has sometimes changed the direction of research by bringing to light commonalities that were missed because few physicians actually saw many affected people with the condition or did not ask the right questions to make the discovery.

In addition, members of the Medical Advisory Boards may be aware of unpublished information and private ongoing research or may become interested in pursuing a research interest brought to their attention by the affected members of a group. The following groups are focused on those affected by progressive hemifacial atrophy, but for more possibilities please see the Organization section.  Please note that the GARD Information Center provides the names of organizations for informational purposes only and not as an endorsement of services.

Parry-Romberg Syndrome Resource, Inc.
4815 Crystal River Ct.
Indianapolis, IN 46240
Telephone: +1-317-566-8149
E-mail: prsresource@comcast.net
Website: http://www.prsresource.com

The Romberg Connection
E-mail: rombergs@hotmail.com
Website: http://www.therombergsconnection.com
Last updated: 4/29/2016

We hope this information is helpful. We strongly recommend you discuss this information with your doctor. If you still have questions, please contact us.

Warm regards,
GARD Information Specialist

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  1. Bucher F, Fricke J, Neugebauer A, Cursiefen C, and Heindl LM. Ophthalmological manifestations of Parry-Romberg syndrome. Surv Ophthalmol. April 1 2016; 6257(15):30073-4. http://www.ncbi.nlm.nih.gov/pubmed/27045226.
  2. Lee Y-J, Chung K-Y, Kang H-C, Kim HD, and Lee JS. Parry-Romberg syndrome with ipsilateral hemipons involvement presenting as monoplegic ataxia. Korean Journal of Pediatrics. 2015; 58(9):354-357. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4623455/.
  3. Aydin H, Yologlu Z, Sargin H, and Metin MR. Parry-Romberg syndrome: Physical, clinical, and imaging features. Neurosciences. 2015; 20(4):368-371. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4727625/.
  4. Panda AK, Gopinath G, and Singh S. Parry-Romberg syndrome with hemimasticatory spasm in pregnancy; A dystonia mimic. Journal of Neurosciences in Rural Practice. 2014; 5(2):184-186. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4064192/.