I have lived in Colorado since 1958 and currently live in the new city of Centennial (Littleton), Colorado, but I'm originally from Las Cruces and Albuquerque, New Mexico. I will be 58 years old in September, was married 15 years, divorced since 1978, have two children, a son 37 years old, who has a 5 year old daughter, (my very own granddaughter) and a daughter 35 years old. Of course, I didn't know that I had Rombergs Syndrome when I was growing up. I don't think my parents knew or if they asked doctors and they really never told me there was a "name" for what caused the right side of my face to look the way it did and still does. I don't think they really knew and if they did, they chose not to tell me about it and didn't want to treat me any different from my siblings or create unnecessary discomfort or trauma for me. I guess I never really let it bother me or subconsciously didn't acknowledge it. It's the looking in the mirror that reminds you, so when I read Kelly's story in the Denver Rocky Mountain News in August, 2001, I was very surprised but grateful for the article and the title "Beyond the Mirror" was so appropriate. Looking beyond the mirror is what we have to do and look within at the person we really are.
I guess the disease progressed from when I was about 7 years old according to pictures I have of me as a child. The right side of my face was smaller, although not "sunken" in like now, I eventually had a dark mark straight down the middle of my face from my forehead to my chin and dark discoloring on the jaw line eventually. I can't quite remember everything, but when I was around 14 my parents took me to El Paso to have the dark mark removed by a plastic surgeon. I guess he just "cut it out" and sewed it back together and the scar that was left was minor compared to the dark line. In 1961 at age 18 I saw another plastic surgeon who recommended and did insert a foam piece shaped to fill in my jaw line and some fatty tissue from my stomach to put around my nose, eye and cheekbone area. So I looked pretty good at the point to go off to college. Through the years the foam piece has slipped or disappeared somewhere but the fatty tissue seemed to stay pretty good around my nose, and oh yeah, he fixed the scar left from removing the dark mark down the center of my face and reshaped the chin scar better. And that was all I had done for a few years.
In 1963 I got married, had two kids, got a divorce, raised my two kids and have been working ever since. I also now have a 5-year-old granddaughter. When I visited a plastic surgeon in the early 80s the doctor knew exactly what it was and showed me a book with lots of people who had the same condition, some a lot worse than mine but nevertheless it had a name. At the time I asked him about silicon injections to fill in my face which I had done in the 70s a couple of times. At that time I decided that I wouldn't have any more done. I didn't want to spend the rest of my life getting "experimental" silicone injections until my face "filled out" just right; no, I decided it wasn't that important and besides there was a lot of controversy about silicone injections. Makeup covers up the dark marks as well as it can and makes you feel better and that you've done the best you can.
Recently my sister and I have been putting together our family album, looking at childhood pictures and at the same time a friend of mine who I recently told about my face (Rombergs) told me about a newspaper article on August 11, 2001 the Denver Colorado Rocky Mountain Newspaper about a 10 year old girl, Kelly, diagnosed with Rombergs Syndrome and you can imagine it was quite a surprise and a coincidence. The few people I have discussed my face with also saw the article and told me about it. I never ever thought there would be an article in the newspaper or anywhere else for that matter about Rombergs. And to further find out that there was a group of people (Romberg's Connection) who have this very unusual disease who can communicate with each other about their fears, pain, acceptance and joy with others who have had to endure the same things in their lives is truly a gift from God.
I've received a lot of welcoming e-mails and we "talk" about how we feel, how similar we look, and the "connection" we have to each other. It's still very strange for me to see the web site and read the stories from others who have experienced the same things in life that I have, some worse, some better. I don't even remember how long the atrophy took, how severe or anything about the changes to my face as I was growing up. I think it's God's way of helping me get through life the best way I can. The only advice I have is for all of us to not forget the person you really are inside and continue to build on that person from the inside, not the outside. The outside will take care of itself as you are truly accepted for the real person you are.
The picture below is me and my 5 year old granddaughter Allison who was visiting from Houston, Texas last July. Her parents (my son and daughter-in-law) were in Breckenridge at the time and I was fortunate to have Allison all to myself for a week.
Petra
Feel free to leave a message for Petra at rombergs@hotmail.com