Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for consultation with one's personal physicians. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
As a support group, The Romberg's Connection is unable to offer medical advice to anyone. However, we are presently working on a listing of doctors with Rombergs experience.

Back to Main PageBack to Personal Stories

All photos and text are the property of the families represented, and may not be used without their consent.

Craig's Story

My name is Craig. I am 25 and from South Africa. This is my story:

When I was 9 I first started noticing that there was something different about the way I looked. My left side top lip was a darker colour and my left ear wasn't as big as the right one. As the years went on my lip seemed to pull up even more and my teeth started to show. When I was 12 I saw a dentist and he said that my jaw needed to be wired. My mom refused to let him procede until we had a second opinion. My GP refered me to a skin and facial disorder specialist who, after many visits, photos and x-rays, diagnosed me as having Rombergs. It was explained to me that for some unknown reason, that soft tissue on certain parts of your body simply did not grow (or appeared to waste away). The fact that it also only occurred on one side on the body was also a mystery. In my case, the left hand side of my face was affected.

I was still quite young and the disorder did not impact on my life a great deal. I went through junior school with no problem, played many sports and had a good circle of friends. I did notice, however, that especially when I played rugby my LHS ear was very sensitive and when it was rubbed or bumped, I felt terrible pain. Hence my career as a professional rugby star had to end. I proceded into high school and went pretty much unnoticed until I was about 16. My peers noticed my face more and I became very self concious. I hated photo day and school dances were not much fun.

I started seeing a plastic surgeon by the name of Dr Bowen-Jones. He began to plan a major procedure which would involve removing a piece of tissue/fat from my back (below my left shoulder blade) and inserting it into the cheek area through an incision along my jaw line. After much discussion with my medical aid, they agreed to assist in paying for the operation. As it was an "experimental" procedure the doctors only charged for the equipment used. The operation took about 8 hours. I came out looking very swollen and very sore. I stayed in hospital for 7 days and was discharged. The doc said that he had put extra tissue in since some of it may be absorbed. The swelling took almost 3 months to go down but now there was too much tissue and my cheek looked permanently swollen. I was just happy to have a more normal looking face. A year went by and I noticed that the "graft" had shifted down (gravity!!) so I returned to the doc and he suggested one more graft from my inner thigh (below my butt) and fill in the area below my eye (which had become slightly hollow). All went well and the scars on my face healed very well.

In November 98 I went back for the first of 2 reductions on my cheek. Being so used to the procedures I had a local (in fact it was quite interesting listening to what went on in the operating room). It was quite successful but required a follow up which I will be having this November 99.

At this time my face is not perfect and people still stare (kids don't know what it is and are usually the first to ask). The hardest thing to deal with is people's first impressions. Those that make the time to get to know me, realise that I'm not a freak or abnormal. But it is still difficult to meet people. I have made a success of my career and continue to do better. I have a few really good, close friends who have grown and felt the pain with me. It is thanks to them that I have come this far and intend to go further. What each of us with Rombergs need to realise is that this physical being we are in, is merely a cover for a beautiful soul within. God only sees our souls and in his eyes we are all special.

Find comfort in the Connection and as Phil Collins would say:

"When you're feeling blue
All I have to do
Is take a look at you
Then I'm not so blue"


Feel free to leave a message for Craig at rombergs@hotmail.com

All photos and text are the property of the families represented, and may not be used without their consent.

Back to Main PageBack to Personal Stories