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. Jason Mouzakes, Airway Surgeon
Email Dr. Mouzakes with questions regarding airway hemangiomas and other vascular
lesions in the airway (throat area).
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.
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
Klippel-Trenaunay
Syndrome is a rare, congenital, vascular disorder affecting one or more
limbs. Klippel-Trenaunay Syndrome was first noted in a 1900 publication
of Archives Generales de Medecine. In the article, Du Naevis Variquex,
Osteo-Hypertrophique, French physicians Klippel and Trenaunay described
a clinical syndrome with three major symptoms (Gloviczki, 1982). These
main symptoms are often referred to as the "triad." The triad consists
of hemangiomas, bone and soft tissue hypertrophy, and vein varicosities.
Hemangiomas are often apparent at birth, or by two weeks of age (Samuel,
1995). The hemangioma, or nevus, is usually confined to a part of the
limb. In other cases, the entire limb is affected by the hemangioma
(Samuel, 1995). Capillary hemangiomas are the most common type and are
called port wine stains due to the red and purple color (Letts, 1977).
Bone and soft tissue hypertrophy is a result of increased growth around
an organ. In many cases, limb length is affected and t he length of
the limb is different than the normal limb. The soft tissue hypertrophy
is symmetrical around the affected extremity. In most cases, the girth
of the limb is larger, although atrophy is common in some patients.
Varicose veins are often very noticeable in Klippel-Trenaunay Syndrome
patients. Varicose veins result from damaged or defective valves in
a vein. A vein becomes damaged when the smooth muscle in the wall of
veins weakens and the valves cannot support the weight of blood. T he
pressure on the valve causes it to collapse and it no longer functions
properly. Klippel-Trenaunay Syndrome patients are affected by other
symptoms as well (See Table 1). These symptoms are variably expressed
and may not have identical effects on other patients. Each case of Klippel-Trenaunay
Syndrome is unique. In 1907, Parkes and Weber described a disorder with
the same symptoms involved in Klippel-Trenaunay Syndrome with the addition
of arteriovenous fistula. This derivative of Klippel-Trenaunay Syndrome
was called Klippel-Trenaunay-Weber Syndrome. 
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