I was born in 1948 with a port wine stain (PWS) on the right half of my face.
I was the second child, the first daughter in the family that would eventually reach 11 kids. I try to imagine the shock, disappointment, and love felt by my Mom especially. She told me about the comments that she had to deal with so she started turning me over onto my right side in the buggy. I believe that she felt sad and guilty and worried about my future.
I remember at a very young age, maybe 3, going on the train into Chicago to the big dark wooden hallways of the University of Chicago. There were doctors there trying to figure out how to “cure” it. Different skin medications were applied, the one I remember the most burned like crazy. It was then covered with gauze and adhesive tape, half my face. I was too young to be self-conscious. The doctors then talked to my Mom about using Xrays on it. I am forever thankful that she said no!
Meanwhile, my vision was foggy in my right eye but as a kid, I knew no better. In first grade, I failed the vision test and was taken to the eye doctors at Chicago’s Eye, Ear, Nose and Throat Infirmary. It was diagnosed as glaucoma so bad it had detached the retina. I went on to have multiple surgeries that failed to reattach the retina. By the time I was 15, the eye was cosmetically a mess with no hope. I agreed to have it removed and replaced with a prosthetic.
People never could tell my right eye was fake! The ocularist was an artist and the surgeons had done an excellent enucleation. I have quite an assortment of old eyes as they need to be replaced every so often.
My experiences with the medical profession from such a young age made a great impression on me. The nurses in the hospital especially, so I knew what I wanted to be from a very young age! After high school, I went into a great nursing school in Chicago. I graduated in 1970 and was still working when COVID19 hit.
I was lucky that I went to a smaller school through 8th grade and never was bullied. In a large public high school, I just blended in but felt unconfident about guys. I didn’t date or get asked out even though I was using makeup. My mom had taken me to a department store in Chicago when she read about a Lydia O’Leary rep being there with Covermark makeup. So at 10 years old, I was having my PWS covered well. Before that my Mom would “lighten” it with “Pancake” makeup using a damp sponge. I still can feel the cold wetness of the sponge and the tightening of my skin as the makeup dried!! But with Covermark my red face was no more. I can still see myself walking down State Street in Chicago, looking at my reflection in the Marshall Fields windows! I looked NORMAL!! I didn’t wear makeup all the time at 10, didn’t feel the need for it every day until my teenage years. And happily, it was waterproof too.
Anyhow, I went to nursing school, met my husband, have 2 kids, and still love being a nurse. I had laser treatments in my late 30’s and my 40’s with minimal lightening. But it looks like treatments for babies is super promising!
- About Port-Wine Stain Birthmarks
- VBF Fact Sheet: Port-Wine Stain Birthmarks
- Retha: Early Access to Treatment
- Cole: What We Know & Remember
- Meghana: A Mother’s Perspective
- River: A Special Twin
- Andrew: A Story of Confidence