Parry Romberg Syndrome

The information to date on Parry Romberg Syndrome is thin and almost non-existent on the Internet. I am the mother of a child who is 16 years of age and began seeing symptoms at approximately 14 years of age. As I research this disease for my son, I will add all the information that I find useful on these pages. I hope we find a way to stop this disease once and for all. I don't believe in standing idly by and watching this progress, I feel a strong desire to do something about it, as I am sure you do if you are reading this page. Don't give up!

If you are ready to discuss, need support, or would like to share your story, please come to our message boards. The only way we will get to the bottom of this, is if we all put our heads together and talk about what we have tried, what works and what didn't work. Let's make this the first thing ever cured on the Internet!

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The Cause of Parry Romberg Syndrome

Lack of research leaves the cause of Parry Romberg Syndrome unknown. However, there are doctors who have their own theories of the cause of PRS. Please see the Parry Romberg Syndrome Research section to view hypotheses.

What is Parry Romberg Syndrome?

Parry-Romberg syndrome is a rare disorder characterized by slowly progressive deterioration (atrophy) of the skin and soft tissues of half of the face (hemifacial atrophy), usually the left side. It is more common in females than in males. Initial facial changes usually involve the tissues above the upper jaw (maxilla) or between the nose and the upper corner of the lip (nasolabial fold) and subsequently progress to the angle of the mouth, areas around the eye, the brow, the ear, and the neck. The deterioration may also affect the tongue, the soft and fleshy part of the roof of the mouth, and the gums. The eye and cheek of the affected side may become sunken and facial hair may turn white and fall out (alopecia). In addition, the skin overlying affected areas may become darkly pigmented (hyperpigmentation) with, in some cases, areas of hyperpigmentation and patches of unpigmented skin (vitiligo). Parry-Romberg syndrome is also accompanied by neurological abnormalities including seizures and episodes of severe facial pain (trigeminal neuralgia). The onset of the disease usually begins between the ages of 5 and 15 years. The progression of the atrophy often lasts from 2 to 10 years, and then the process seems to enter a stable phase. Muscles in the face may atrophy and there may be bone loss in the facial bones. Problems with the retina and optic nerve may occur when the disease surrounds the eye.

This quote from the National Institute of Neurological Disorders and Stroke

The way my son describes what is happening to him is that "the meat is missing from my face." We had never heard the word "atrophy" before, so when I initially started researching, I looked up all kinds of things I could think of to find a diagnosis before we went to the doctor.

Search terms I tried that were not successful, maybe listing them here will help someone find this page.

"Face thinning"

"Skin thinning"

"Epidermis layer missing"

"Facial skin tight"

"Face pigmentation discolored"

"Half of face"

"Chin line"

"Dry skin tight and thin"

"Divot"

"Indention"

"Right side of face"

"Left side of face"

"Thin Skin"

Parry Romberg Syndrome Synonyms

Parry Romberg is also referred to as the following:

Progressive Facial Hemiatrophy

Progressive Hemifacial Atrophy

Romberg Syndrome

PRS

HFA