Cowden Syndrome/bannayan-riley-ruvalcaba Syndrome

I developed bilateral Lymphedema of the legs at 4 years of age. Soon after, I began getting lumps under my arms, which often infected. There were about 12 to 15 of them altogether, and they regressed on their own by mid-adolescence. I know now that these were cystic lymphangiomas.

I was clinically diagnosed, well into adulthood, with Cowden Syndrome/Bannayan-Riley-Ruvalcaba Syndrome.

My three young sons have this too. They have the vascular Red Ear Syndrome, and one son has CMTC. We are afraid the Red Ear Syndrome may be a precursor to arteriovenous malformations, as our gentic syndrome includes avms. One son has regular nosebleeds and ear bleeds too. We hope to get treatment soon.

Anyone else out there with vascular problems due to

Cowden Syndrome/Bannayn-Riley-Ruvalcaba Syndrome?

Elizabeth

Could they be from a chemical exposure?

I think so.

The one I suspect is 2-butoxyethanol.

It seems to cause NHL, diabetes, many autoimmune metabolic issues.

This woman's husband has a large part of his body covered with what must be 'wine' red blotches. She is pregnant & doctor says baby has growth abnormalities.

Some help for you might be glyconutrients, such as shared by this Autism group

& some other info on it that I've gathered up

It would be part of serious CFIDS of someone in the family line.

Please have all of you AVOID this chemical at all costs. It is in paint, and many cleaning products.

Mother-Margaret e-mail

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There is a common chemical exposure since WWII days - Suspect 2-butoxyethanol for many autoimmune issues and birth defects. Suspect it for cause of 'gulf war syndrome' - Suspect it for death of Pres FDR - What I shared with Carol

birthmark.org/board/showthread.php?p=10348#post10348

5-25-06