Vascular Birthmarks Foundation Forum - View Single Post - Jacqui's Story - Life With a Lymphatic Malformation
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Old 05-13-2006, 07:12 PM
Elizabeth
 
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Default Bannayan-Riley-Ruvalcaba Syndrome and Lymphatic Malformations

I had Lymphatic Malformations that began in childhood too. At four years of age my legs both swelled up with Lymphedema at the same time I was developing 12-15 cystic lymphatic tumors under both arms. I know know these as Lymphangiomas. I have had recurrent Cellulits/Acute Lymphangitis off and on for many years.

I'll be strightforward here. I lived with the lymphatic malformations and other symptoms through mid-adulthood. Doctors scoffed at the Lymphedema ("just fat legs") and the tumors. They should be ashamed of themselves, actually, as I have now been diagnosed by an expert Geneticist with a rare disorder known as Bannayan-Riley-Ruvalcaba Syndrome/Cowden Syndrome. Lymphatic malformations are one of the more seldom seen symptoms of this dosorder, but I happened to have fit the bill. Don't want to alarm you, but it might be good to familiarize yourself with BRRS/CS in case your child goes on to develop this.
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