Expert's Corner

 

 

Ask the Founder


VBF Announces "Ask The VBF Founder." Linda Rozell-Shannon is the leading lay expert (non doctor) in the world on the subject of vascular birthmarks.

 

Babies with Birthmarks™

Our newest program - guidelines for physicians to follow to diagnose and treat vascular birthmarks with the earliest intervention.

Recent Medical Papers and Research

New Research Out of Boston


Dynamic Cooling Paper by Dr. Nelson and Wangcun Jia


Arterio-venous Malformations Powerpoint Presentation


PWS paper by Dr. Mihm and L. Rozell-Shannon


SWS Glaucoma Facts by L. Rozell-Shannon and Dr. Fay

Test for Birthmarks

Psychosocial and Emotional Issues for Individuals with a Port Wine Stain

Simple things you can do to manage KTS (Dr. Delfanian and Linda Shannon)

Ulcer Care and Treatment (pdf)

Simple things you can do to manage KTS
By Linda Rozell-Shannon and Kamiab Delfanian,M.D.

The following is a list of suggestions offered by Vascular Birthmark Foundation authored by Kamiab Delfanian, M.D. VBF's Ask the KTS expert, and Linda Rozell- Shannon (VBF President) as an educational tool to patients affected by Klippel-Trenaunay Synrome (KTS) and their families (October 2005).


Things to do:


1) Swim 3 times per week. Swimming promotes a gentle stimulation of blood to circulate properly throughout the body.
2) For varicosities involving the leg, keep the leg elevated at regular intervals(15 minutes every 2-3 hours) or every hour if possible, so that the affected leg is higher than the heart. This allows the blood to flow away from the affected leg.
3) Wear a compression stocking on the affected limb throughout the day. This will help keep blood from pooling in the extremity. It will also protect the extremity from subtle trauma.
4) For KTS varicosities involving the arms you can get a custom compression stocking to wear. It has the same effect as for the leg by keeping blood from pooling in the affected limb as well as protecting the skin from direct trauma.
5) A cool bath in a tub with a small bath spa or water circulator will have a similar effect to swimming in that it will promote good circulation.
6) Cold compresses to the affected area can often provide temporary relief.
7) Pay close attention to your skin and seek medical care at the slightest sign of cellulitis (skin infection).
8) Wear comfortable shoes while walking even at home if you have varicosities of lower extremities or you have diabetic neuropathy (poor sensory function of feet in diabetics will not allow detection of pain induced by trauma).
9) Use creams or lotions to keep the skin soft and moist.
10) Use gentle soap for bathing or showering.
11) Dry skin may cause itching which after scratching can lead to small abrasions and increase the possibility of skin infection.
Simple things you can do to manage KTS Page 2

Things NOT to do:


12) Although still controversial estrogen has been attributed to venous and arterial thrombosis (clot formation). It is therefore advised that estrogen is best avoided in women affected by KTS. Women in their child bearing age or perimenopausal state should consult with their primary care or OBGYN physicians regarding estrogen use.
13) Do not sit in a hot tub or Jacuzzi as heat can cause vasodialation (Dilates the blood vessels). There is also potential for minor burn injury with hot bath that may lead to skin infection.
14) Avoid overexertion.
15) If varicosities involve your leg, avoid being on your feet for a prolonged period of time. Keep you feet elevated during the day as much as possible.
16) Avoid excessive lifting if you have KTS involvement of the upper extremity. Regular exercise is however encouraged.
17) Do not use an electric blanket or apply any heated device to the affected area.
18) Avoid tanning salons as it may cause skin injury.
19) Use an electric shaver for your legs. Avoid razors since they can result in small cuts of the skin which may lead to infection.
20) Exercise caution when cutting your fingernails or toenails of the extremities in which there is varicosities. Importance of this in patients who also have diabetes can not be overstated.



 

Parent's
Corner



Information for Parents

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Don't Forget!
Every Day is a Day of Awareness for VBF!
Visit the VBF International Day of Awareness Website:
birthmark.org/awareness


Good Search

What if the VBF earned a penny every time you searched the Internet? Now it can! GoodSearch.com is a new Yahoo-powered search engine, with a unique social mission. Every time you use GoodSearch, money is generated to support the mission of VBF. Just go to www.goodsearch.com and be sure to enter the Vascular Birthmarks Foundation as the charity you want to support. The more people who use this site, the more money we'll earn so please spread the word! Go to http://www.goodsearch.com

If you think your child has a hemangioma Click Here.
hemangioma
If you think you or your child has a port wine stain Click Here.
Before and after of port wine stain
If you think you or your child has a venous malformation Click Here.
Before and after of venous malformation

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Partners

Anomalie Vasculaire Site for French speakers worldwide, and friend of VBF that offers support and information about vascular birthmarks


Publications for Parents:

  • VBF Vascular Birthmarks Brochure - Download and Print - A comprehensive brochure describing all vascular birthmark types, syndromes and treatment options. To print, click here (you will need the Acrobat Reader to view and print this document).
  • Doctor Visit Survey Have you been seen by a doctor to assess a vascular birthmark? Please click here and complete our survey. This survey will be used to provide feedback to the doctors about the information and treatment they provide to families affected by a vascular birthmark. Complete your survey and mail to Corinne Barinaga, c/o VBF Director of Information Services, PO Box 106, Latham, NY 12110.
  • Before you visit, email, or speak to a birthmark specialist, be sure to read our Checklist for Parents!
  • Dr. Rosen's Vascular Birthmark Information for Parents
  • Simple things you can do to manage KTS (Dr. Delfanian and Linda Shannon)

You will need Adobe's Acrobat Reader to open and print the pdf documents. If you do not already have it installed, you can find it here.

You will need Microsoft's Word to open and print the Word Documents.

RECRUITING SUBJECTS FOR A RESEARCH STUDY ON FACIAL BIRTHMARKS