Living with PRS

The story of Heather

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 soft tissue on the left side of my face. It has also affected my vision and hearing . I have brain tumors which has cause me neurological malfunction, and one side of my brain is smooth whereas the other side is normal. I have mental illnesses and seizures and I can’t remember much to save my life. It has also caused my eyelashes under my left eye to fallout and my eyebrow is super small compared to the right. I have dark spots where the disease has affected the areas of my face the most and i have a dark line going down from the mid-left side of my forehead down my nose connecting to my upper lip.

My first surgery was when I was sixteen (16) after the disease went into remission. Since then I have had twenty (20) surgeries. Alot of reconstructive and some to ultimately make me live pain free. 

As of right now(2/2021)My most recent surgery was August of 2020 for a lower eyelid lift and before that i had one in early January of 2020, but im expected to have a few more procedures. I live daily in chronic pain and refuse to take any kind of narcotics for it, so I am a MMJH patient and am here to say that it helps tremendously. I can tell that my vision is getting worse in my left eye along with the hearing in my left ear. I’ve recently started having extreme jaw pains. Living with PRS is a daily metal battle but I’m here living life to the fullest and showing my kids that different is beautiful!