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.

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

Paul's Story

July 2003

My name is Paul. I am 39 and from South Australia. This is my story:

In 1999 a work friend noticed my right cheek was sunken. This was the first time I also noticed any facial difference. I felt normal but I had been experiencing face pain, tingling and mild headaches. I went to see my GP, he diagnosed me with Bells Palsy, I went to another GP for a second opinion and he referred me to a Neurologist. The Neurologist did not agree with the Bells Palsy diagnoses and sent me for a MRI scan. The scan came back clear. I was not happy so I went to another Neurologist for a second opinion, this Neurologist said I just had a face where one side is more "A Symmetrically" than the other.

Over the next couple of years my face pain and headaches have got worse (not unbearable). My right cheek has become more sunken and I have started to get a sore right jaw in the mornings.

I recently went back to see my GP and got a further referral to see another Neurologist (no luck). I am not happy with my appearance and struggle each day to face people.

I went to see a cosmetic doctor and had a Hydra Genesis injection, this treatment only had a mild improvement (very expensive, and the treatment needs to be repeated every 3 months).

Still not happy and still looking for answers. I went to see a Plastic Surgeon, he immediately diagnosed me with Romberg's hemifacial atrophy, he said my condition was mild and has recommended either a series of fat injections that would have to be repeated every 6 months or a dermal fat graph which would last much longer. I am scared but I want to do something.

I found this web site very comforting.

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

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