Julie's Story
14 June 1999

I was diagnosed with Romberg Syndrome at about 18 years of age. I had noticed that the dimple on the right hand side of my face had gradually become more prominent at the age of 14 or 15 but didn't really think much about it. My grandmother was the one that finally got me to discuss it with the doctor. She was really afraid that I had cancer or something! The plastic surgeon I was sent to, told me that it was Romberg Syndrome. My mother was wonderfully supportive trying every avenue that she could think of. We visited a homeopathic doctor who gave me a dose of some-thing-or-other.

My Auntie contacted a German friend who made enquiries in Germany. The latest from Germany was that they were trialing Vitamin B injections. My doctor said that it wouldn't hurt me so why not try it. I think it was for about 6 weeks that I went once a week to get the foul smelling injections. Well, whether it was one of the above trials or shear luck, the atrophy appeared to have stopped. It is very hard to tell whether it stopped before or after first going to the plastic surgeon. We discussed several surgical reconstruction options but nothing sounded very promising so I decided to live with it as it was.

It is only since finding this Internet site that I realise that the symptoms that I have experienced are only a small part of this strange and inexplicable condition. I haven't suffered from pain or headaches of which I am very thankful. I have grown my hair long to cover my face as best I can which helps me to face the world. I don't often talk about it to anyone and always wait until people ask me about it. I find that most people think that I have been in an accident and that it is scarring. I have had many doctors ask what it is and when I tell them they run for their medical dictionaries only to find no reference to it. It does feel very isolating when even the doctors have never heard of it.

I am now 29 and feel very lucky to have a supportive family and two lovely children who accept me as "Mum" and don't seem to notice that I don't look quite like other people. I am once again considering surgery after getting up-to-date information. It is wonderful to have access to this site and contact with people who have had very similar experiences. I would like to thank everyone that has passed on such valuable information and been so friendly.

Best Regards,
Julie

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