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-   -   Are haemangiomas and PWS genetically related? (

crandellj 08-04-2013 12:36 AM

Are haemangiomas and PWS genetically related?
Hi! I just found this site while playing on the computer. I am 49 and have a PWS that covers my right eyelid, forehead and crown. I received some of the early laser treatment at Stanford with Dr. Apfelberg in the late 70s and early 80s. I saw some lightening but stripe marks and scarring as well. I had one or maybe two additional laser treatments at my dermatologist's in the early 2004/2005 maybe? Anyhow, in 1999, I gave birth to my daughter. Just before her first birthday, I noted a very tiny red dot on her right forearm that grew quickly to the size of a pencil eraser, slightly raised. I took her to her primary care physician who diagnosed a granuloma. I disagreed with him and asked for a referral to a dermatologist, as I felt it was an obvious haemangioma...the dermatologist looked at it and confirmed immediately that yes, it was a haemangioma. It was monitored yearly by her primary care physician and has slowly flattened out and is now just a small mark on her arm. She is 13 years old. Is this absolutely just a coincidence? I just read a piece that said the genetic mutation occurs AFTER conception. BUT, what genetic piece might pass from me? The proclivity for that mutation to occur? I'd appreciate your thoughts out there, thanks!

missy 08-04-2013 02:45 PM

Hi and welcome!

What piece did you read that a genetic mutation occurs after conception? If you could post a link, that would help other patients with their research.

I remember a study once whose premise was that there was a difference in the placenta of babies with vascular birthmarks. It looked a valid argument and I do hear a lot of anecdotal evidence from parents about problems with placenta. But nothing was ever proven.

If your daughter's birthmark is still visible at 13, you might take her to a specialist. Back then, doctors called every vascular birthmark "hemangioma" but that might not be the correct term for what she has. I think she might possibly have some other kind of vascular malformation... hemangiomas do not appear one year after birth and they involute by puberty.

Anyway, post some links if you can and we'll kick some ideas around!


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