We are not aware of any studies that have investigated treatment for hair loss associated with progressive hemifacial atrophy (PHA), and no treatment guidelines exist. There is one case report (on an individual patient) that describes application of botulinum toxin (Botox) for pain relief in a person with PHA, which reportedly improved hair growth over the injection regions. However, one case report does not enable researchers to generalize the findings or establish that something is safe and effective for others.
Many researchers believe that PHA and a type of linear scleroderma called en coup de sabre (ECDS) are both manifestations of localized scleroderma. PHA and ECDS often coexist in one person. Hair loss (alopecia) is a feature of ECDS, and some scientists believe that the presence of alopecia may be used to distinguish (if desired) between ECDS and PHA. ECDS is associated specifically with cicatricial alopecia (also called scarring alopecia). This type of alopecia results from damaged hair follicles that are replaced with scar tissue, causing permanent hair loss. You can read about treatment for cicatricial alopecia on the National Institutes of Health website here.
A hair restoration doctor can evaluate hair loss and recommend an appropriate treatment plan based on the underlying cause and extent of hair loss. Effective treatments for some types of hair loss are available, but in some cases hair loss is permanent. Depending on the cause, options may include medications, surgical procedures, laser therapy, and wigs or hairpieces. You can ask your doctor for a referral to a hair restoration doctor, or you can search for one on the International Society of Hair Restoration Surgery’s website.
Last updated: 2/16/2017
We hope this information is helpful. We strongly recommend you discuss this information with your doctor. If you still have questions, please
Borodic GE, Caruso P, Acquadro M, Chick S. Parry-Romberg syndrome vasculopathy and its treatment with botulinum toxin. Ophthal Plast Reconstr Surg. January-February, 2014; 30(1):e22-25. https://www.ncbi.nlm.nih.gov/pubmed/23719195.