Vascular Birthmarks Foundation Forum - View Single Post - Does anyone know much about Tufted Angioma and KHE?
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Old 09-05-2011, 12:05 AM
PE Islander PE Islander is offline
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Join Date: Sep 2011
Posts: 1
Default Tufted Angioma

Hello everyone,
I am a 33 year old female who was diagnosed with tufted angioma when I was 15. (It was diagnosed as a result of a biopsy on the back of my neck where I had a painful red area for the previous 1-2 years.) Everyone on this post seems to have little babies with this condition. I feel so OLD! But would be willing to answer any questions you have. I was the first case in Atlantic Canada, and noone seems to know what to do...although I have seen specialists in PEI, NB and NS. I have had some pretty crazy suggestions, and some pretty lame suggestions. Tufted Angioma is painful to touch and when touched can trigger shooting sharp pains surrounding the area. Clothing tags in the neck area irritate and trigger painful episodes. I think that the 'roots' of the tumor are deep and are not limited to just the surface redness and pain. I can feel another one growing long before it is visible on the surface to anyone else. I think that it is affected by hormones, as it is increasingly sensitive around my menstrual cycle. During my pregnancy, the painful episodes increased, and the growth of the area occured more rapidly. (Possibly due to folic acid stimulating the growth of new cells?) I have had steroid injections in the area, and I have had the areas cut out. (Only temporary relief, as I believe that if one little cell is left behind a new one grows). All in all, I am very grateful that it is not cancerous, and I am very lucky that my tufted angioma is hidden with my long hair. Every once in a while I google it, and hope that someone has found a cure. The Childrens Hospital in Boston seems like a great spot. I wish I would have been forwarded there when I was young. They seem to have some new techniques and ideas that weren't available in the 90's. I would love for someone to be interested in my case to help me. I would love to use my experiences to help others.....I hope this is helpful!
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