What is the life expectancy of someone with Parry-Romberg syndrome / Progressive hemifacial atrophy?

Parry-Romberg syndrome, also known as Progressive Hemifacial Atrophy (PHA), is a rare disorder characterized by the progressive wasting away or atrophy of one side of the face. The condition typically begins in childhood or adolescence and progresses slowly over several years. While the physical manifestations of Parry-Romberg syndrome are well-documented, there is limited information available regarding the impact of the condition on life expectancy.

Parry-Romberg syndrome primarily affects the skin, underlying tissues, and sometimes the bones on one side of the face. The atrophy can lead to various cosmetic and functional issues, including facial asymmetry, loss of facial fat, muscle wasting, and dental problems. In some cases, it may also affect the eye, causing vision problems or even blindness on the affected side.

Since Parry-Romberg syndrome is a rare condition, there is a lack of large-scale studies specifically focused on life expectancy. However, it is important to note that Parry-Romberg syndrome is generally considered a non-life-threatening condition. The atrophy typically stabilizes after a few years, and the progression of the disease tends to slow down or stop altogether.

While Parry-Romberg syndrome itself may not significantly impact life expectancy, it is crucial to consider the potential complications associated with the condition. These complications can vary from person to person and may include:

• Neurological symptoms: Some individuals with Parry-Romberg syndrome may experience neurological symptoms such as seizures, migraines, or facial pain. These symptoms can be managed with appropriate medical treatment.


• Ophthalmic complications: In some cases, Parry-Romberg syndrome can affect the eye on the affected side, leading to vision problems or even blindness. Regular eye examinations and appropriate eye care can help mitigate these complications.


• Psychosocial impact: The visible facial asymmetry caused by Parry-Romberg syndrome can have a significant impact on a person's self-esteem, body image, and overall psychological well-being. Psychological support and counseling can play a crucial role in managing these aspects of the condition.

It is important for individuals with Parry-Romberg syndrome to receive comprehensive medical care and regular follow-ups to monitor any potential complications and manage them appropriately. Collaborative care involving dermatologists, neurologists, ophthalmologists, dentists, and psychologists can help address the various aspects of the condition.

While Parry-Romberg syndrome may present challenges and require ongoing management, it is not typically associated with a significantly reduced life expectancy. With appropriate medical care, support, and management of potential complications, individuals with Parry-Romberg syndrome can lead fulfilling lives.