Calef Hillies Parry - an English Physician who described the condition in 1823

Mauritz Romberg- a German neurologist who wrote his description of the disease in 1846

A funerary portrait of someone with Parry Romberg syndrome from AD 70

What is Parry Romberg Syndrome?

The main feature of Parry Romberg Syndrome is:

• Wasting (shrinkage or atrophy) of the soft tissue of one half of the face

Other common symptoms include:

• Headaches - often migraine
• Facial pain
• Crowding of teeth
• Patchy hair loss or an area where the skull is sunken
• Areas of skin that are pigmented or have lost their pigmentation (vitiligo)

Rarer symptoms include:

• Wasting of the tongue, arm, leg or trunk
• Epilepsy - sometimes due to abnormalities seen on brain scans
• Changes in eye colour

What causes Parry Romberg Syndrome?

We just don't know.Despite lots of theories its not clear still what causes it.

The best guess is that it is caused by some kind of inflammation in the nerves that supply skin and fat possibly caused by the body making antobodies to itself. However, no one is really sure

What is the best treatment - will it get worse?

These are understandable questions but there is so little research on Parry Romberg syndrome that it is very hard to give answers to these questions.

Some people have been satisfied with the results of cosmetic surgery, others have been a bit disappointed. Occasionally if the atrophy is progressing rapidly then drugs to suppress the immune system have been used but there have never been any clicnial trials in this condition

Through the help of 205 people I have compiled a Survey of treatments that people have had - it will be available once it has been published in a medical journal. There is cert

How long has it been around?

Parry and Romberg, English and German physicians working separately in the early 19th century, first described patients with difficulties with shrinkage of one side of the face.

Since then there have been literally hundreds of articles on Parry Romberg .

You can see them by clicking on References on the navigation bar

Recently a case of Parry Romberg was authenticated in a 2000 year old Egyptian so whatever it causing it is nothing new.