My name is Tammie Schlesinger from Hollister, California. I am 54 years old and have Type 1 Sturge-Weber Syndrome.
When I was born with a large purple stain (Port-Wine Birthmark) from far on the top of the left side of my head down past my cheek, the doctor told my parents, "It will go away she was just laying on that side in the womb." Well, it didn't work out that way! That's okay though, because back then they didn’t know what a Port-Wine stain or Sturge-Weber syndrome was, not in my small town anyway!
After seeing doctors who said it was "just a birthmark," we dealt with it. When it was time to start school, my mother didn't want me to be bullied so she covered it with makeup. No, I didn't understand, I was 5! What I did know was makeup doesn't stop a bully!
Shortly after starting school, I was having eye trouble. We found out I had a stye (or sty) and after further doctor visits, I was diagnosed with Glaucoma. I was lucky enough to meet Dr. Heatherington in San Francisco. Even though there were many visits. He saved my sight!
Then at the age of 6, I started having seizures. And at age 7, I had a mild stroke. We found out I had an AVM. By then we had heard of some cases of SWS. I was sent to specialists, but I was told I would have seizures for the rest of my life.
Fast forward to the age of 21, I became pregnant with my first daughter, and I was told to have an abortion. I was not going to do that. After going to a few hospitals and leaving discouraged, I had an appointment at Stanford. This is where I met the man who changed my life—Dr. John Adler. He told me he would monitor me through this pregnancy, doing tests to make sure the baby was healthy, and then after having a C-section and once I had recovered, we would have surgery to stop the seizures. He did just that! My daughter was born healthy and happy. When she was 6 months old I went in for surgery. I have been seizure-free now for 34 years. (Holy Cow I just did the math!)
To make a long story short, no life was not always easy, but it made me the person I am today. I am Thankful! I have a wonderful husband, beautiful daughters, and 4 amazing grandchildren! I am Blessed!
