PWS on Genitalia? - Page 2 - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Port Wine Stain Help > Port Wine Stain Help and Resources

Reply
 
Thread Tools Display Modes
  #11  
Old 10-19-2011, 12:15 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,711
Default

Thank you so much for remembering to come back and give us an update. I'm so glad you're getting the best possible news. If anything unforeseen happens, do remember to come back by and let us know.

Interesting case, too. I've been around here more than a decade and can only remember one other case of PWS in that area, and that person had PWS over 90% of his body.

Thanks again! I hate it when people leave me hangin'!

Missy
Reply With Quote
  #12  
Old 10-19-2011, 06:55 PM
erih erih is offline
Member
 
Join Date: Nov 2008
Location: Illinois
Posts: 56
Default

wow. I hope the dr's are right! And that the ultrasounds come back clear
__________________
The hope a dream and the wings to be free
Reply With Quote
  #13  
Old 01-06-2012, 10:18 AM
JaCkMarTIn JaCkMarTIn is offline
Junior Member
 
Join Date: Jan 2012
Posts: 5
Default

I did not send him the photos, but am willing so I can get his professional opinion. He told me that the genitals are an unusual place for PWS and to get in to see a pediatric dermatologist. He also said it sounds like a hemangioma. Everything I have read and seen has made me think PWS.
__________________
Pasadena Fitness Training
Reply With Quote
  #14  
Old 01-10-2012, 03:35 AM
nickbar nickbar is offline
Senior Member
 
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054
Default

Likely not hemangioma since you still have the stain. Have you talked with Dr. Nelson? I would encourage you to do so.
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump