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Blue rubber bleb nevus syndrome, kindly suggest

I am a 38 yr old caucasian female in Australia and one of the diagnosed cases of Blue Rubber Bleb Nevus Syndrome . It covers 3/4 of my trunk and covers a large area internally. It is in a number of organs also. I haven t read of anyone else that has it on the trunk, only that it does occur there. I have also had it cut through due to a mastectomy and the effects of chemo on BRBNS were a first too. It is taking over rapidly now. Is there anyway of stopping its progression across my body before it is everywhere ?
Asked On : Thu, 3 Mar 2011
Answers:  3 Views:  423
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  User's Response
I am 57 female and have the same problem as you.Have had this problem since birth large blue marks over legs and trunk .I was told I had this condition when I was pregnant and I had to have a termination as I had them internally which could
cause problems.Local doctors had no idea what this problem is they don`t` seem very`up `on this condition which has made my life a misery.
Answered: Sun, 22 May 2011
  User's Response
Hi, I also live in Australia. I have Epidermal Nevus Syndrome, which I'm going to assume is much the same. There are many treatments to remove it but from what I have been told ( and that's not much as its a pretty rare case in Australia) is that it will not destroy it and has just as much chance to grow back in the future. Carbon Oxide laser treatment is one method of removing it only leaving scars and i assume a bit of skin discolouration. There is also creams which are acid based to burn them off. I have tried this, not effective at all and very uncomfortable. I have a lot more infomation I could send you if you like. My email is
Answered: Wed, 23 Mar 2011
OBGYN Dr. Rakhi Tayal's  Response
Thanks for writing to us.
The syndrome you are suffering from has a genetic relation and is immunological based disorder. It is very difficult to stop its progression. Some immunomodulatory drugs can be tried but the success rate is low. Gene therapy for such disorders is still under research. Sorry that there is nothing much in the medical science that can help you.
I hope this information has been both informative and helpful for you.
Dr. Rakhi Tayal

Answered: Fri, 23 Sep 2011
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