The Autoimmune Registry
Progressive hemifacial atrophy Insufficent data to report on this disease.
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  • Names
    • Progressive hemifacial atrophy
    • Idiopathic hemifacial atrophy
    • Parry Romberg syndrome
    • Progressive facial hemiatrophy
    • Romberg's syndrome

    Category: Skin
    Prevalence 476 cases in the US (Gupta 2016). Female/Male ratio: Unknown.
    Age of Onset Onset typically occurs at age 10.
    Description Progressive hemifacial atrophy, also called Parry Romberg Syndrome, predominantly affects the skin of the face and is believed to be autoimmune in nature, though the cause is still being researched. Typically, the skin deteriorates gradually over one side of the face, beginning with the upper jaw and the area extending from the nose to the corner of the lip, and then spreading to other parts of the face. In some cases, symptoms are not restricted to only one side of the face and may also occur in the trunk or limbs. Severe cases can spread to the muscles, bones, and cartilage. Patients can expect symptoms to progress over a period of 2 to 20 years, after which time progression plateaus. Treatments have so far been unsuccessful in stopping progression, but they do help manage associated discomfort. Cases that progress over longer periods of time and beginning at a younger age often lead to the most severe symptoms, resulting in facial distortions and nerve disorders.

    Not confirmed as an autoimmune or autoinflammatory disease.


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    Resources Link to Clinical Trials
    Link to PubMed
    References Link to Healthline
    Link to Cleveland Clinic
    Profile by: Leslie Green
  • Profile updated September 2024
  • Charts generated Nov 16, 2024 at 09:55 AM ET

  • Progressive hemifacial atrophy sex breakdown


    Progressive hemifacial atrophy age breakdown



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    * Disease is suspected as autoimmune, but unconfirmed.
    Data Source: Graphs on this page represent data from the Autoimmune Registry Inc. here. To protect participant anonymity, results derived from fewer than 5 participants are not graphed. The Autoimmune Registry Inc is a 501(c)(3) non-profit supported by donors like you.


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    * Biologic medications.
    Data Source: Graphs on this page represent data in electronic health records from the All of Us research database. As of July 2024, there are 451,000 sets of electronic health records collected from participants. A snapshot of the data can be found here. To protect participant anonymity, results derived from fewer than 20 participants are not graphed.
    The All of Us Research Program is supported by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; and Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. In addition, the All of Us Research Program would not be possible without the partnership of its participants.


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    Data Source: Graphs on this page represent data in self-reported survey results from the All of Us research database. As of July 2024, there are 560,000 participants who have completed these surveys. This dataset, however, may not be representative of the US population. A snapshot of the data can be found here. To protect participant anonymity, results derived from fewer than 20 participants are not graphed.
    The All of Us Research Program is supported by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; and Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. In addition, the All of Us Research Program would not be possible without the partnership of its participants.


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    Insufficent data to report on this disease.