Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
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1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder
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Ask the VBF Experts

Dr. Stuart Nelson, VBF Co-Medical Director and International Port Wine Stain Laser Specialist
Dr. Nelson will answer your questions concerning the diagnosis and treatment of Port Wine Stains.

 

Dr. Gregory Levitin, Hemangioma and Malformations Surgeon, NYC and LA
Dr. Levitin will answer your questions regarding the surgical treatment of all vascular birthmarks and tumors.

 

Dr. Robert Rosen, Vascular Lesions of Arms and Legs Interventional Radiologist
Our expert for all non-brain AVMs and vascular lesions of the arms and legs, Dr. Rosen welcomes your questions.

 

Dr. Roy Geronemus, NYC and International Laser Specialist
If you have a question or concern about laser treatments in general, contact Dr. Geronemus.

 

Dr. Aaron Fay, Hemangioma and Malformation Eye Surgeon
Dr. Fay will answer your questions about orbital birthmarks.

 

Corinne Barinaga, VBF Family Services Director
Corinne Barinaga, our Administrative Director, will answer emails concerning family advocacy, treatment questions, or physician referral.

 

Dr. Martin Mihm, VBF Co-Medical Director and Research Director
Dr. Mihm is coordinating and directing research regarding vascular birthmarks and tumors.

 

Dr. Darren Orbach, Pediatric Neurointerventionalist for AVMs and PHACE
VBF is proud to welcome Dr. Orbach!

 

Dr. Anne Comi, Sturge Weber Syndrome Specialist
One of the leading experts on Sturge Weber Syndrome, Dr. Comi will be responding to your questions concerning this syndrome.

 

Dr. Alex Berenstein, Malformations and AVM Interventional Radiologist
Ask Dr. Berenstein your questions regarding interventional radiology.

 

Dr. Kami Delfanian, KTS Treatment Specialist
Send your questions concerning KT Syndrome to Dr. Delfanian.

 

Dr. Barry Zide, NYC Hemangioma and Malformations Surgeon
If you have a question or concern about hemangioma and vascular malformation treatment in general, contact Dr. Zide.

 

Basia Joyce, VBF Insurance Appeals Specialist
Please send your questions regarding your appeal or request for out-of-network treatment to Basia.

 

Dr. Joseph Edmonds, Lymphatic Malformations Surgeon
Ask Dr. Edmonds your questions related to Lymphatic Malformations.

 

Anna Duarte, M.D., Florida Expert
Ask our expert Dr. Duarte, your questions about receiving treatment in Florida.

 

Dr. Orhan Konez, Interventional Radiologist
Questions regarding reading and interpreting films and treating malformations with sclerotherapy or embollization can be sent to Dr. Orhan Konez.

 

Dr. Milton Waner, Hemangioma and Malformations Surgeon
Email Dr. Waner with questions regarding hemangiomas and other vascular lesions.

 

Dr. Steven Fishman, Internal Lesions Surgeon
Ask Dr. Fishman your questions about liver and other internal vascular lesions.

 

Dr. Calil, Lymphatic Malformation Surgeon
Dr. Calil will answer your questions about Lymphatic Malformations.

 

Elissa-Uretsky Rifkin, M.Ed. CMHC Midwest Developmental Specialist
A trained developmental specialist and is on the board of VBF. Send questions concerning hemangiomas and this topic to Elissa.

 

Dr. Stavros Tombris, European Surgeon
Fr. Tombris treats all forms of hemangomas, port wine stains and malformations.

 

Dr. Stevan Thompson, Military (Tricare) Surgeon
Dr. Stevan Thompson has joined us to answer questions concerning the treatment of vascular birthmarks in the military.

 

Dr. Helen Figge, Pharmacist
If you or your child has a vascular birthmark and you have a question regarding a prescription drug, please ask Doc Helen Figge.

 

Dr. Linda Rozell-Shannon, VBF President and Founder
Dr. Linda Rozell-Shannon is the leading lay expert in the world on the subject of vascular birthmarks.

 

Lex Van der Heijden, CMTC Foundation
If you or your child has CMTC, please contact Lex with your questions.

 

Leslie Graff, East Coast Developmental Specialist
Leslie is a trained developmental specialist. Send questions concerning port wine stains and this topic to Leslie.

 

Linda Seidel - Make-up Expert
Ask Linda Seidel your questions about make-up.

 

Nancy Roberts - Make-up Specialist
Ask our expert Nancy Roberts, Co-Creator of Smart Cover Cosmetics (www.smartcover.com), your questions about make-up.

 

Eileen O'Connor, Adult Living with PWS

 

Laurie Moore, Make Up Expert from Colortration
Laurie Moore, from www.colortration.com will answer makeup related concerns.

 

Alicita, Spanish Expert
Ask our expert Alicita, your questions in Spanish.

 

Dr. Thomas Serena, Wound Care Expert

 

Sarina Patel, Young Adult Advocate

 




 

What Our Families Are Saying About Us

 

"We relied on the Vascular Birthmarks Foundation to provide us with the information, the contacts, the resources, and the support that we needed to get through this difficult time. Their theme, "We are making a difference" couldn't be more accurate. For us, it was all the difference in the world."
Jill Brown

 


Hi Linda
Just a note to say how wonderful I found the interview of you and Capital 9 news. Thanks so much for your devotion.
Gina

 




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.