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I am a 30 year old female living in Australia who has blue rubber bleb nevus syndrome. I have been to specialists for years who have focused on it more as a hemangioma. It is an area that isn't widely known here. My issue now is that it is moving rapidly. It currently covers 1/2 to 3/4 of my trunk area. I experience an extreme amount of pain often first thing in the morning, but lately all the time. This comes and goes. I would be very interested in chatting with anyone going through the same thing or anyone that knows of successful treatment for this syndrome on such a large scale. Sclerotherapy has been mentioned, but even the Dr's are not sure. Happy to hear from you..