Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for consultation with one's personal physicians. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
As a support group, The Romberg's Connection is unable to offer medical advice to anyone. However, we are presently working on a listing of doctors with Rombergs experience.
Back to Main Page Back to Personal Stories
All photos and text are the property of the families represented, and may not be used without their consent.
"I was born with this rare disease Parry Romberg Syndrome. It started developing on the left side of my face when I was five (5) years old. It deteriorated my forehead to my upper jaw bone tissue and muscle tissue. It has caused me brain malfunction, meaning one side of my brain is smooth and the other is normal. I have mental illnesses and seizures and I can't remember much to save my life (hence why it has taken me so long to write this). It has also caused my eyelashes under my left eye to fall out and my eyebrow is super small compared to the right."
"My first surgery was when I was sixteen (16) after the disease went into remission. Since then I have had nineteen (19) surgeries. A lot of reconstructive and some to ultimately make me live pain free."
"My most recent surgery was January 2020, but I'm expected to have a few more. I live daily in chronic pain and I can tell that my vision is getting worse in my left eye along with the hearing in my left ear. Living with PRS is a daily mental battle but I'm here living life to the fullest and showing my kids different is beautiful!"
Please contact Heather at rombergs@hotmail.com for further information.
Back to Main Page Back to Personal Stories
All photos and text are the property of the families represented, and may not be used without their consent.