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 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?

The following information may help to address your question:


How might progressive hemifacial atrophy be treated? 

Currently there is no treatment to stop the progression of progressive hemifacial atrophy, but various treatments have been tried. Because it is very similar to  linear scleroderma treatment is also similar, and may include:[1][2][3]

Hemicranial pain syndrome (can be in form of migraine or continuous severe headache, but on one side of the head) has been treated successfully by repetitive local botulinum toxin A injections.[1] Treatment of the eye and nerve involvement may include the use of some medications, such as steroids, and surgical procedures, depending on the specific problem.[4][1]

Progressive hemifacial atrophy stops progressing on its own within 2 to 20 years, which makes it hard to decide if a therapy is successful. After the condition does stabilize, reconstructive surgery can be done to restore the fat tissue that is lost with the disease and, therefore, recover the natural shape of the face, and treat the sunken eye (enophthalmos) and the eyelid retraction.[1] 

The following techniques are options for surgical reconstruction:[1][2]

  • Silicone implants
  • Muscle flap grafts
  • Fat grafts with or without stem cells
  • Bone and cartilage grafts
  • Injections to fill in hollows below the skin such as hyaluronic injection, which may be also improve the enophthalmos and eyelid retraction.
Since multiple systems of the body may be affected, a multidisciplinary team of physicians, surgeons, dentists, and psychologists may be needed to manage the different symptoms.[4][1][5][6]
Last updated: 2/5/2018

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 information about this service. 

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

The World Craniofacial Foundation maintians a list of craniofacial centers. Click here to access a listing of sites where these clinics are located. 
Last updated: 4/28/2016

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. Feldman I, Sheptulin VA, Grusha YO & Malhotra R. Deep Orbital Sub-Q Hyaluronic Acid Filler Injection for Enophthalmic Sighted Eyes in Parry-Romberg Syndrome.. Ophthal Plast Reconstr Surg. January 23, 2018; https://journals.lww.com/op-rs/Abstract/publishahead/Deep_Orbital_Sub_Q_Hyaluronic_Acid_Filler.98545.aspx.
  3. Nair M, Ajila V, Hegde S, Babu G S, & Ghosh R. Clinical and radiographic features of parry-romberg syndrome. Journal of Istanbul University Faculty of Dentistry. 2017; 51(3):45–49. http://www.journals.istanbul.edu.tr/iudis/article/view/5000211178/5000182676.
  4. 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/.
  5. 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/.
  6. 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/.