This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.
|Medical Terms||Other Names||
|80%-99% of people have these symptoms|
Asymmetry of face
Unsymmetrical face[ more ]
Little lower jaw
Small lower jaw[ more ]
|30%-79% of people have these symptoms|
|Abnormality of the musculature||
|Aplasia/Hypoplasia of the skin||
Absent/underdeveloped skin[ more ]
|5%-29% of people have these symptoms|
|Deeply set eye||
Deep set eye
Sunken eye[ more ]
Different colored eyes
Drooping upper eyelid
|Percent of people who have these symptoms is not available through HPO|
Narrow opening between the eyelids
|Delayed eruption of teeth||
Delayed teeth eruption
Delayed tooth eruption
Late eruption of teeth
Late tooth eruption[ more ]
Malalignment of upper and lower dental arches
Misalignment of upper and lower dental arches[ more ]
Atrophy of half of face
Decrease in size of half of face
Decrease in size of one side of the face
Shrinking of half of face
Shrinking of one side of the face[ more ]
Round back[ more ]
Underdeveloped ears[ more ]
Intermittent migraine headaches
Migraine headaches[ more ]
Patch of white hair
White patch[ more ]
|Short mandibular rami||0003778|
Wasting of the tongue
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
The following techniques are options for surgical reconstruction:
If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.
If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.
You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.
Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
Rare Disease Day at NIH on March 1, 2018
December 19, 2017
Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question
I am 17 years old and have this syndrome. I also have hair loss at the right side of the scalp and no facial hair on the right side. How can I grow my hair? See answer
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? See answer
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? See answer