My name is Theresa, and I have Parry-Rombergs Syndrome.
I have posted some pictures of me growing up, in the hopes that it will help someone to recognize the earlier stages of Rombergs. It is hard to look at pictures of people in their 30's, and try to determine if this is the same thing that you or your child has. This picture was taken when I was 3 years old. This was three years before I was diagnosed with Parry-Romberg Syndrome. The doctors offered no explanation, and no remedies. I had Rombergs, and there was nothing that they could do about it. The right side of my face & body are affected by Rombergs.
This was taken on the day of my First Communion, when I was 8 years old. As you can see the atrophy was well defined at this point.
This is my 6th grade school picture from when I was 11 years old. You can see better how my right eye seems to be back further than my left eye. Also the atrophy on my chin is getting darker. The indentation of my forehead is also more pronounced at this point. I picked out these glasses myself. My older sister Susan got mad because I got the same ones that she had. Aahh ! - The Seventies !
This isn't a very good picture, but you can see how the indentation on my forehead travels upward. I was around 13 years old when this picture was taken. As I find more pictures, I will get them scanned and posted on my page. Most of the pictures that I have, I am turning my "good side" to the camera. Really makes me wish I didn't destroy so many pictures of myself over the years.
This picture was taken last summer (June, 2003) in Dubuque, Iowa while having lunch with Marilyn & husband Gerri. The little guys are Joshua who is now 6 and Jack who's 4 years old. The big guy is my husband Steven.
Here's a description of what Rombergs looks like for me today. I have an indentation in my forehead that travels up onto my skull leaving about a quarter inch wide ravine of baldness in it's path through my hair. ( This is especially annoying on cold, windy days.) My right eye is further back in my head than my left eye. I have a small indented discolored spot to the right of my right nostril. On my lower lip, I have a small discolored spot which makes my lips look uneven. The right side of my chin is also darker in color, and is smaller than the left side of my chin. The skin along the right side of my jaw is thin which makes that side of my face look smaller. I also have some light brown spots which can be found directly under the right side of my chin. The big ears, I inherited from my Dad, looks like Josh will have them as well !! Rombergs has also affected below my face. I have a small discolored indentation on the right side of my back, between my shoulder blades. This is in addition to two similar marks found parallel to each other on the small of my back.
The Romberg's Connection is definitely a "God-send". I feel as if all of us have been roaming the desert for years, and now we are being called to join together. No longer, do we feel alone. The very first time that I ever felt completely "normal" was the day that I was sitting talking with Marie, Marilyn, Monica & Terry. That was in October of 1997.
Early fall of 1998, Steven & I once again made the 4 hour drive to Dubuque to see Marie & Rex & Marilyn & Gerri and to meet Pat & his wife Bette. I feel so fortunate to have so many fellow "Rombergers" near by.
On April 23, 1999, Steven, Joshua & I met Tiffany & her mom Debbie. They were visiting Chicago from their home state of Pennsylvania. Tiffany is in her school band, and was here with them for a competition. Debbie being the brave soul that she is, was along as a chaperone.
Tiffany reminded me very much of myself at her age. Her atrophy looks very similar to mine. It is strange looking into the face of another person with Rombergs...kind of gives you the opportunity to see "yourself" the way other people see you. Sometimes it's hard to deal with the strange looks and rude comments that we tolerate but our strength comes from within, and from each other. Meeting Tiffany made me think back to my own high school days and how difficult it was at times. But in the end, it was a few "true" friends who got me through the tough times.
From the first moment that I talked to Terry it was like finding my long lost brother, there was strong comraderie right from the start. He has become one of my very best friends. (Terry blushes) Marilyn has also become one of my closest confidantes.
For 25 years, I dealt with Rombergs on my own, thinking that I was the only person in the world who had this disease. And now just 2 incredible years later, I have talked to people from all over the world who are in the same boat as me. I have e-mailed, written letters, sent pictures, talked on the phone, and driven many hours to keep in touch with all of you as best as I can. This group has given a whole new meaning to the word "happiness".
I thank God every day for letting this happen in our lives. Becoming friends with all of you is one of the BEST things that has ever happened in my life. I feel truly blessed to be a part of the Romberg's Connection.
Just remember that the Romberg's Connection never closes, and you won't be the "new" person for very long. Everyone who reads this is invited to send me an e-mail at rombergs@hotmail.com.
Thanks for being out there.
{{ GROUP HUG }}
Sincerely, Theresa