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Expert's Corner
VBF NEEDS LANGUAGE TRANSLATORS
- SPANISH, PORTUGESE, AND ASIAN LANGUAGES Babies with Birthmarks™
Recent Medical Papers and ResearchVBF has a great deal of research available, including
a bibliography for offline research. |
Klippel-Trenaunay Syndrome
(Information taken from Comparing The Effects
of Surgical Intervention, Case study: A minimally invasive
approach to the treatment of Klippel-Trenaunay syndrome If you need additional resources or support with birthmark related problems, please try posting in our Discussion Forum. The VBF Birthmark Fact Booklet is here (pdf) Need a medical opinion? Ask the Experts
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VBF NEEDS LANGUAGE TRANSLATORS - SPANISH, PORTUGESE,
AND ASIAN LANGUAGES How to
Appeal an Insurance Denial or
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VBF is proud to announce that Dr. Waner, the leading birthmark surgeon and treatment specialist will be answering emails regarding birthmark treatment.
VBF welcomes Dr. Stuart Nelson of the Beckman Laser Institute as another
one of our medical experts. Dr. Nelson will answer your questions concerning
the diagnosis and treatment of Port Wine Stains. 
Meet
Dr. Gregory Levitin, partner to Dr. Milton Waner. Dr. Levitin will answer
your questions regarding the surgical treatment of all vascular birthmarks
and tumors. VBF's Ask the Surgeon! 
VBF
is proud to have the world renown expert, Dr. Alex Berenstein as its expert
in AMVs. Send your questions concerning AVMs to him. 
VBF
is proud to add Dr. Thomas Serena as our wound care expert. Please send
Dr. Serena your questions regarding wound care for an ulcerated hemangioma
or other vascular birthmark, tumor, or syndrome that requires wound care.
VBF is proud to welcome Dr. Giangola of NYC as our KTS surgical expert. If you have questions concerning the surgical treatment of KTS or other vascular lesions of the arms, legs, or trunk, contact him. 
VBF
is proud to announce the addition of an expert who treats Lymphatic Malformations.
Ask Dr. Edmonds your questions related to this vascular lesion. 
VBF is proud to welcome Dr. Steve Thompson as our Military surgeon to answer questions about vascular birthmarks to our military families. He is currently working with Dr. Waner in NYC. 
Dr.
Aaron Fay joins VBF as our eye specialist VBF's Eye Specialist will answer
questions concerning eye problems and birthmarks.
VBF
is proud to showcase Dr. Martin Mihm, Jr. as our Research Expert. Dr. Mihm
is coordinating and directing research regarding vascular birthmarks and
tumors. 
VBF
Welcomes Dr. Bob Rosen as our expert for all non-brain AVMs and vascular
lesions of the arms and legs. Dr. Rosen welcomes your questions concerning
these lesions. 
VBF
is proud is welcome Dr. Steven Fishman of Boston Children's Hospital as
our Ask the Internal Lesions Expert. Ask Dr. Fishman your questions about
liver and other internal vascular lesions.
VBF
is excited to have a multilingual expert. Dr. Piris is from Boston and can
answer your questions in Spanish, Portugese, and Italian and of course English.
Please send your questions concerning your vascular birthmark or tumor to
Dr. Piris. 
VBF
is proud to add Dr. Orhan Konez as our expert Interventional Radiologist.
Questions regarding reading and interpreting films and treating malformations
with sclerotherapy or embollization can be sent to Dr. Orhan Konez. 
VBF is proud to add Dr. Tombris as a European surgeon expert. He treats all forms of hemangomas, port wine stains and malformations.
VBF
is proud to announce that Dr. Anne Comi, one of the leading experts on Sturge
Weber Syndrome will be responding to your questions concerning this syndrome.
Read more about Dr. Comi and ask her expert advice on SWS. 
VBF
is proud to welcome Dr. Delfanian as our Klippel-Trenaunay expert. Send
your questions concerning KT Syndrome to Dr. Delfanian. 
VBF is proud to welcome Dr. Denise Metry as our PHACES expert. If you have any questions regarding this syndrome, please ask Dr. Metry. 
VBF
is proud to offer to our families a new service. VBF's Ask the Laser Doctor
offers expert advice on laser treatments for all vascular birthmarks by
Dr. Susie Astner. 
VBF
is proud to announce that Dr. Edwin F. Williams III will be answering emails
from physiciansregarding the diagnosis and treatment of individuals with
a vascular birthmark.
VBF
is proud to offer the services of a Pharmacy Doc who worked for many years
at a Vascular Birthmarks Clinic. If you or your child has a vascular birthmark
and you have a question regarding a prescription drug, please ask Doc Helen
Figge. 
VBF
is proud to announce that Dr. Jason Mouzakes from Upstate New York has joined
us as our airway expert. Email Dr. Mouzakes with questions regarding airway
hemangiomas and other vascular lesions in the airway (throat area). 
VBF
Announces "Ask Dr. Linda." Dr. Linda Rozell-Shannon is the leading
lay expert in the world on the subject of vascular birthmarks.
VBF is proud to have Lex van der Heijden, Chairman, CMTC, as our Cutis Marmorata Telangiectatica Congentica expert. If you or your child has CMTC, please contact Lex with your questions. 
VBF is proud to add Barbara (Basia) Joyce as our insurance appeal expert. Please send your questions regarding your appeal or request for out-of-network treatment to Basia.
VBF is proud to have Corinne Barinaga, our Administrative Director, to answer emails concerning family advocacy or treatment issues. 
Elissa
Uretsky- Rifkin, M.Ed. CMHC is a trained developmental specialist and is
on the board of VBF. Send questions concerning hemangiomas and this topic
to Elissa 
Leslie
is a trained developmental specialist. Send questions concerning port wine
stains and this topic to leslie 
VBF is proud to add Alicia as our Adult with an AVM who can translate your spanish questions to one of our docs and can answer back to you in spanish.
VBF
is happy to provide you with an expert opinion regarding the use of make-up
to cover a birthmark. Ask our expert Nancy Roberts, Co-Creator of Smart
Cover Cosmetics (www.smartcover.com), your questions about make-up. 
Our
newest program - 
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 v ery 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. 
Please
join the VBF and Texas Rangers outfielder Frank Catalanotto and his wife Barbara
as we 
