question/information ks syndrome - 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 > Additional Resources > General Resources

Reply
 
Thread Tools Display Modes
  #1  
Old 04-04-2004, 07:19 PM
Lee New Zealand
 
Posts: n/a
Default question/information ks syndrome

I would like to hear if anyone has the KS syndrome or PWS, that have had their veins removed. I need to know if that helps the pws? I have been informed that lazer treatment does not help. Can anyone please help?
Reply With Quote
  #2  
Old 07-09-2004, 01:37 PM
ncwh
 
Posts: n/a
Default Re:question/information ks syndrome

Lee

Are you talking about Klippel-Treanuay Syndrome? I have just recently discovered I have this but very mildly. (One leg just slightly larger than the other, venous issues and a giant portwine stain that is very light pink clouds covering the back of my right leg.) I am going to a doctor here in Dallas to talk about one prominent vein that is bothering me. I will let you know.

Noel Holmes
Reply With Quote
  #3  
Old 09-15-2004, 02:49 AM
Mah
 
Posts: n/a
Default Re:question/information ks syndrome


I live in New Zealand and I have a large port wine stain, that covers the right side of neck and goes right around the back of my neck and covers a small portion of my back and shoulders. I hate it but there is pretty much zilch I can do to have it removed as I live quite a distance away from a medical centre that removes birthmarks and I do not have the money to pay for such a treatment.
I would however appreciate any information regarding the cost's of birthmark removals, the names of hospitals in New Zealand that remove birthmarks.

Thank you.
Reply With Quote
  #4  
Old 09-15-2004, 05:22 AM
nickbar nickbar is offline
Senior Member
 
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re:question/information ks syndrome

I do not have information specifically on New Zealand. But, you might want to look into laser treatments. PWS cannot really be "removed"...but laser is a very helpful tool in lightening it and keeping it at bay.

Corinne
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
Reply With Quote
  #5  
Old 09-15-2004, 05:23 AM
nickbar nickbar is offline
Senior Member
 
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re:question/information ks syndrome

Dr. Swee Tan
Bowen Hospital
Churchill Dr.
Crofton Downs
Wellington

here is a doctor listed... maybe a starting point?

GOOD LUCK

Corinne
__________________
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

Similar Threads
Thread Thread Starter Forum Replies Last Post
port wine and k-t syndrome ombry Port Wine Stain Help and Resources 2 10-31-2006 02:38 AM
PHACES Syndrome Families missy Announcements 0 07-18-2006 10:52 AM
Red Ear Syndrome -- ear/nose bleeds? Elizabeth AVM Help and Resources 5 05-23-2006 03:43 AM
Beckwith-Wiedemann Syndrome..in St. Louis, MO eprmo General Resources 0 02-15-2006 02:59 PM
hemangiomas & Phaces syndrome roccosma General Resources 6 10-23-2005 03:56 AM