before and after of hemangioma before and after of PWS before and after of venous malformation before and after of AVM before and after of lymphatic malformation CMTC sturge-weber syndrome kts PHACE

Expert's Corner

Ask The Vascular Birthmark Expert
Dr. WanerVBF is proud to announce that Dr. Waner, the leading birthmark surgeon and treatment specialist will be answering emails regarding birthmark treatment.
Ask the PWS Expert
Dr.Nelson 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.

Ask the Surgeon
Dr.LevitinMeet 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!

Ask the AVM Expert
Dr. BerensteinVBF is proud to have the world renown expert, Dr. Alex Berenstein as its expert in AMVs. Send your questions concerning AVMs to him.
Ask the Wound Care Expert
Dr. SerenaVBF 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.
Ask the KTS Surgery Expert
Dr. GiangolaVBF 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.
Ask the Lymphatic Malformation Expert
Dr. EdmondsVBF is proud to announce the addition of an expert who treats Lymphatic Malformations. Ask Dr. Edmonds your questions related to this vascular lesion.
Ask the Military Surgeon
Dr. ThompsonVBF 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.
Ask the Eye Specialist
Dr. FayDr. Aaron Fay joins VBF as our eye specialist VBF's Eye Specialist will answer questions concerning eye problems and birthmarks.
Ask the Research Expert
Dr.MihmVBF is proud to showcase Dr. Martin Mihm, Jr. as our Research Expert. Dr. Mihm is coordinating and directing research regarding vascular birthmarks and tumors.
Ask the AVM and Extremities Expert
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.
Ask the Internal Lesions Expert
Dr. FishmanVBF 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.
Ask the Doctor in Spanish, Portugese, or Italian
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.
Ask the Interventional Radiologist
Dr. KonezVBF 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.
Ask the European Surgeon
Dr. TomrisVBF is proud to add Dr. Tombris as a European surgeon expert. He treats all forms of hemangomas, port wine stains and malformations.
Ask the SWS Expert
Dr. ComiVBF 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.
Ask the KT Expert
Dr. DelfanianVBF is proud to welcome Dr. Delfanian as our Klippel-Trenaunay expert. Send your questions concerning KT Syndrome to Dr. Delfanian.
Ask the PHACES Expert
Dr. MetryVBF is proud to welcome Dr. Denise Metry as our PHACES expert. If you have any questions regarding this syndrome, please ask Dr. Metry.
Ask the Laser Doctor
Dr.AstnerVBF 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.
Ask the Doctor's Expert
Dr. WilliamsVBF 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.
This form is intended for physicians ONLY. Parents who need assistance should ask an expert. Only physicians will receive a reply.
Ask the Pharmacy Doc
Helen FiggeVBF 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.
Ask the Airway Expert
Dr. MouzakesVBF 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).
Ask Dr. Linda, VBF's President and Founder
Ask the VBF FounderVBF Announces "Ask Dr. Linda." Dr. Linda Rozell-Shannon is the leading lay expert in the world on the subject of vascular birthmarks.
Ask the CMTC Expert
Lex van der Heijden, Chairman, CMTCVBF 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.
Ask the CMTC Doctor
VBF is proud to announce the addition of Dr. Marilyn Liang of Boston Children's Hospital as our Ask the CMTC expert. Send your questions regarding CMTC to Dr. Liang
Ask the Insurance Appeal Expert
Barbara JoyceVBF 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.
Ask the Family Services Expert
VBF is proud to have Corinne Barinaga, our Administrative Director, to answer emails concerning family advocacy or treatment issues.
Ask the Developmental Specialist
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  
Ask the Developmental Specialist
Leslie is a trained developmental specialist. Send questions concerning port wine stains and this topic to leslie    
Ask the Adult Rep in Spanish
AliciaVBF 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.
Ask the Makeup Expert
Ask the Makeup ExpertVBF 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.

Contact the Oral and Dental Experts


Physician to Physician Case Study Forum created by Dr. Orhan Konez

 

VBF NEEDS LANGUAGE TRANSLATORS - SPANISH, PORTUGESE, AND ASIAN LANGUAGES

Babies with Birthmarks™

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

Recent Medical Papers and Research

VBF has a great deal of research available, including a bibliography for offline research.

Port Wine Stains: Clearance, Cure, and Recurrence
To Treat or Not to Treat

The following rebuttal by Dr. Stuart Nelson and Dr. Roy Geronemus was published in the New England Journal of Medicine in response to an article about the recurrence of Port Wine Stains (PWS) after pulsed dye laser treatment. At this year’s conference in Irvine, several physicians spoke about the pathology, progression and treatment of PWS. To summarize what was presented, after a PWS is treated using the pulsed dye laser, the vessels that are targeted by the laser will not necessarily come back, but rather new, deeper vessels will work their way up to the top of the skin thus making “some” stain appear. It is important to understand this because many people believe that PWS will always come back and, therefore, they should not have laser treatment. This is not true. While the laser does not “cure” the PWS, it offers the most hope for clearance, for keeping the skin from thickening and cobbling and for maintaining the best aesthetic outcome for the patient (comment by Linda Rozell-Shannon, President and Founder of the Vascular Birthmarks Foundation, 11/8/07).

Comments from Dr. Stuart Nelson and Dr. Roy Geronemus:

"We reviewed “Redarkening of Port-Wine Stains 10 Years after Pulsed-Dye-Laser Treatment” by Huikeshoven et al (NEJM 2007;356:1235-1240) with great interest and would offer our comments.

Unfortunately, the laser technology utilized by Huikeshoven’s group was the Candela SPTL1b, which is now considered obsolescent for port wine stain (PWS) laser therapy. This device did not utilize dynamic cooling, which allows the clinician to use safely much higher light dosages. Very likely, the light dosages in current use from lasers that are available today are a factor of more than two higher than those used in the Huikeshoven study. Moreover, other laser parameters such as wavelength, pulse duration and spot size were also “fixed” and could not be adjusted to tailor the needs of each individual patient’s lesion. PWS blood vessels are heterogeneous in terms of their sizes and depths. Consequently, the ability to vary the parameters with each treatment session and amongst different patients results in better clinical results. It is our belief that the more lesion clearing obtained, the less likely the chance of recurrence.” NOTE: This statement now has been qualified to mean that the vessels that are treated may not recur but new ones will find their way to the surface of the skin and cause “some” stain to appear like the PWS has returned. This is not true. New, deeper vessels are migrating to the surface of the skin. So, the stain appears but it is comprised of new vessels, not necessarily the ones that were treated by the laser. (Linda Rozell-Shannon, 11/8/07).

According to Nelson and Geronemus, “Multiple devices are now available for PWS treatment, each with its own unique wavelength and pulse duration. Both parameters affect the depth and degree of heating in PWS vessels of different sizes. At our institutions, we have multiple lasers including the Gemini, four Candela pulsed dye lasers (SPTL1-b, ScleroPLUS, C-Beam and V-Beam, and Perfecta), Lumenis VersaPULSE and the Cynosure dual-wavelength Cynergy Multiplex on our permanent equipment inventories.

Commonly, several devices are used during an extended treatment protocol in order to destroy vessels of different sizes. When therapy is first initiated, we commonly use shorter wavelengths and pulses to target the typical small (30-50 mm) diameter vessels seen in pediatric PWS. Thereafter, longer wavelengths and pulses are used to target the residual larger and deeper PWS blood vessels.

When patients are referred to our centers after previous treatments at other institutions, we always review all previous medical records to determine which laser device was used. Changing the wavelength or pulse duration of the laser can result in substantial PWS fading not previously observed with single device therapy.

Two notable items from the Huikeshoven study deserve further comment. First, the average age of the patients treated ten years ago with the SPTL1b device was 13. Studies have recently shown that aggressive treatment of infants and young children at earlier ages improves PWS clearance. There are two important “optical” advantages to treating patients at as young an age as possible: 1) less cumulative ultraviolet light exposure results in less epidermal melanin which competes for the absorption of laser light; and 2) less collagen in the skin results in less light being back-scattered out of the skin. The end result of both advantages is that in younger patients more light penetrates deeper into the skin to destroy targeted PWS blood vessels. Second, it has also been documented that there can be anatomical variation in terms of the response to laser therapy. For example, the central face does not respond as completely or as quickly to laser therapy as the lateral face, and PWS located in this area are more likely to recur.

The Huikeshoven study is helpful in educating patients and their families, as well as medical professionals, that it is possible to encounter PWS darkening after laser therapy. However, we believe that the benefits of laser therapy far outweigh the risks of no treatment. If left untreated, many port wine stains often become incompatible with normal life due to the development of bumps (vascular nodules) on the skin surface which can often bleed spontaneously with incidental trauma. Improvements in laser technology over the past decade, including the use of multiple laser devices through an extended treatment protocol and selective epidermal cooling permitting the use of higher light dosages, have expedited lesion clearing. Finally, a more aggressive approach to treating infants and young children at earlier ages has also demonstrated great promise.” (2007)


J. Stuart Nelson, M.D., Ph.D., Irvine, CA
Roy G. Geronemus, M.D., New York, NY

 

Find a PhysicianFind a Parent ResourceBuddy Booby
Meet Buddy Booby, VBF's Officical Mascot

  

Mothers' Day is May 11th
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Help support VBF by purchasing your flowers from Flowerpetal.com.

Beauty Comes From Within
Purchase a pendant or pin….$29.95
Order online or by mail

Vascular Birthmark Support .com offers beautiful jewelry as well as key chains and picture frames with proceeds going to benefit vascular birthmark awareness and fundraising. Visit Vascular Birthmark Support. com today!
Pendant

Purchase silicone bracelets….$5.00
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Purchase a Buddy Booby Book….$15.99 softcover and $21.99 hardcover

Birthmark Book FREE with $24.95 donation!
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Purchase a Birthmark Buddy $15.00
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VBF Birthmark Bear

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www.goodsearch.com


Make Your United Way Pledge to VBF


Go GREEN and Support VBF! Vascular Birthmarks Foundation is partnering with Recycling for Charities, a non-profit organization aimed at reducing electronic waste. By donating your old cell phones, pagers, and other electronic devices you have the unique opportunity to help keep the environment clean and support VBF at the same time! Please click here to learn more about this exciting program and remember to designate VBF as your charity of choice.

VBF NEEDS LANGUAGE TRANSLATORS - SPANISH, PORTUGESE, AND ASIAN LANGUAGES

If you can volunteer your time to translate VBF's key informational pages into one of the above mentioned languages, or in any other language not indicated, contact VBF President and Founder Linda Rozell-Shannon at hvbf@aol.com. There are approximately 24 key pages. Please put "Language Translation" in the subject line. This is very important for our families all over the world to be able to have the highest quality of information and to have it in their own language. We can make a difference, but we need your help to continue to help families all over the world that are affected by vascular birthmarks.

How to Appeal an Insurance Denial or
Request Out-of-Network Treatment
(pdf)

The Catalanotto FamilyPlease join the VBF and Texas Rangers outfielder Frank Catalanotto and his wife Barbara as we team up to strike out vascular birthmarks!

Donna and Evan Ducker and Buddy Booby Make it Big...

CBS Early Show

VBF Gets Referenced in Buddy Booby Birthmark Articles

CBS Early Show

Information for Parents

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

Information on syndromes associated with vascular birthmarks

Multifocal Lymphangioendotheliomatosis with Thrombocytopenia
Read about Jadyn's Journey with this rare vascular syndrome

Multifocal Lymphangioendotheliomatosis With Thrombocytopenia
A Newly Recognized Clinicopathological Entity

Article Located at Archives of Dermatology

Multifocal Lymphangioendotheliomatosis With Thrombocytopenia:
A Rare Cause of Gastrointestinal Bleeding in the Newborn Period

Article Located at Pediatrics

Please Note:
Dr. Waner's Office Has Moved To:
Vascular and Birthmark Institute of New York
126 West 60th Street
New York, NY 10023
Contact Clinical Coordinator directly at:

Corey R. Tournay, R.N., Clinical Coordinator
Vascular Birthmark Institute of New York
126 West 60th Street, Ground Floor
New York, NY 10023
Tel: 212-636-3974
Fax: 212-636-3979
CTournay@chpnet.org

If you have an appointment or are trying to make an appointment please make sure you know that he is now at a new location but still in Manhattan.

VBF is Making a Difference

What Our Families Are Saying



75 Minute Miracle - Anna before and after surgery done by Dr. Waner in 75 minutes

Chapters of the VBF

VBF
VBF Europe
VBF Latin American
VBF New Zealand
VBF Australia
VBF India
VBF Africa
VBF Asia
Sturge-Weber Syndrome Community
SWSC-Canada

Partners

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

Participate in our Annual Day of Awareness
Pariticpate in our Annual Book Reading of Buddy's Booby Birthmark Book
Participate in our Kids Who Care Program
Participate in Glens Gang newsletter for kids with birthmarks

See Dr. Waner in Europe
If you are a patient of Dr. Waner's, we are in need of before and after photos. Click here.

YOU CAN HELP - PARTICIPATE IN VARIOUS VASCULAR BIRTHMARKS STUDIES
Research Studies

New! Our list of research studies for vascular birthmark related research.

Low-Dose Aspirin Study for people with SWS

NEW PHACES Study

PWS Study

Use of the Atkins diet for children with Sturge-Weber Syndrome

PHACE Syndrome Registry. Parents of children with PHACE Syndrome registry

The Effect of Facial Hemangiomas on Psycho-Social Development

 

Publications for Parents
Find helpful documents for families

MAKE UP FOR BIRTHMARK COVERING
Nancy Roberts of www.smartcover.com will send anyone who wants to cover a birthmark a gift certificate. Write directly to our Ask the Make-up Expert on our experts corner and receive a free gift certificate for $15.00 towards the purchase of any Smart Cover make up product.


Read Kay's Story (VBF Europe Rep)
Kay before SmartCover and Kay after SmartCover
Make-up by Stacey Craven
Aesthetician/Makeup Artist

Do you have any suggestions to improve the services we offer to our VBF families? Send us your comments and suggestions!

Christine, today Linda Rozell-Shannon and her daughter Christine- The Founder of VBF Tells Her Personal Story

Meet the Webmistress
Missy Scott
Missy has worked with VBF for seven years and is responsible for all technical and design issues of this site. If you have a question or concern about VBF's website, please contact her.

Nevus Clinic (Non-Vascular Birthmarks) Starts at Mass. General Hospital
Dr. Martin Mihm and his team will be seeing patients with congenital nevus (giant hairy, moles, pigmented lesions, etc.) and all other non-vascular birthmarks (Mongolian spots, Spitz Nevus, etc.) in addition to Vascular Birthmarks, at the Saturday clinics at the Mass. General Hospital in Boston. Dr. Mihm is combining the Vascular Birthmarks Clinic with the Congenital Nevus clinic to form the first combined vascular and non-vascular birthmarks clinic. Linda Shannon will be the clinic coordinator at these combined clinics. This clinic is for adults and children. To schedule an appointment, call Andrea at 617-724-1350.