Rombergs Syndrome is best described by the National Organization of Rare Disorders. So take a minute, go read the description , but then meet me right back here.
As you know, my name is Theresa Hildebrand. What you probably don't know is that I was diagnosed with Parry-Romberg's Syndrome when I was 6 years old, back in 1972. The doctors offered no explanation, and no remedies. I have Rombergs, and there is nothing that I can do about it. The right side of my face & body are affected by Rombergs.
Those of you who have known me for years are probably wondering why I never mentioned Rombergs to you before. Well the answer is simple, I never talked about it. It's embarassing to say, "Hey, I've got this really rare disorder, no one knows how I got it, and no one can do a damn thing about it, and I do not know another living soul who has it." Well now, thanks to The Rombergs Connection , I am no longer sitting here feeling lost and alone. I have met some truly wonderful people through "The Connection". Here are the links to a few of their stories:
The very first time that I ever felt completely "normal" was the day that I was sitting face-to-face and talking with other people from the Rombergs Connection. What an extraordinary feeling to meet other people who have Rombergs. For 25 years, I was alone, and last October, I was hugging 4 other people who all have Rombergs. All's I can say is that I thank God every day for letting this happen in our lives. Becoming friends with all of the people from the Connection is one of the BEST things that has ever happened in my life. I feel truly blessed to be a part of the Rombergs Connection.
Just remember that the Rombergs Connection never closes, and you won't be the "new" person for very long. Feel free to drop me a line at auntie_5@hotmail.com Sincerely, Theresa
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