The story of Ammia
My name is Ammia. I am 8 years old and live in the Southern US. When I was 3 years old, my mother noticed that the left side of my face was strangely shrinking/disappearing. Later that year I was diagnosed with Parry-Rombergs Syndrome. There is really not much information on how it is triggered, or any clear cut answers. If you were to draw a straight line down my face, only my left would show changes or atrophy. This disease can affect the eyes, ears, the brain, causing seizure, loss of sight or hearing. My tongue is also shrunk on just the left side, and effects my teeth, lips, jaw and other structures on the left side. This disease is very rare but usually occurs in females prior to 20 years old. I traveled from the south 3 times to my wonderful surgeon in Wisconsin, where I underwent an initial 12 hr surgery to remove part of my vascular tissue in my back, and had it implanted into my left cheek. Implanting living tissue instead of just fat into the face of those with PRS has been showed to stop progression, so this is what my parents chose and hoped for the best outcome. I returned 2 more times for revision surgery. I am doing well as of today! I have had no further progression. Thank you for reading my story.