
Ask the VBF Experts
Dr. Gregory Levitin, Hemangioma and Malformations
Surgeon
Dr. Levitin will
answer your questions regarding the surgical treatment of all vascular birthmarks
and tumors.
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. Martin Mihm, VBF Co-Medical Director and Research Director
Dr. Mihm is coordinating and directing research regarding vascular birthmarks and tumors.
Dr. Aaron Fay, Hemangioma and Malformations Eye Surgeon
Dr. Aaron Fay will answer questions concerning eye problems and birthmarks.
Dr. Roy Geronemus, NYC and International Laser Specialist
If you have a question or concern about laser treatments in general, contact Dr. Geronemus.
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.
Dr. Darren Orbach, Pediatric Neurointerventionalist for AVMs and PHACE
VBF is proud to welcome Dr. Orbach!
Corinne Barinaga, VBF Family Services Director
Corinne Barinaga, our Administrative Director, will answer emails concerning family advocacy, treatment questions, or physician referral.
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.
Brian Bolinger, Esq. Director VBF Advocacy Alliance
This alliance is being formed to coordinate legislative, legal, and insurance related issues regarding the diagnosis and treatment of vascular birthmarks and tumors.
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
Dr. Kami Delfanian, KTS Treatment Specialist
Send your questions concerning KT Syndrome to Dr. Delfanian
Dr. Gary Giangola, KTS Treatment Specialist
If you have questions concerning the surgical treatment of KTS or other vascular lesions of the arms, legs, or trunk, contact Dr Giangola.
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.
Dr. Thomas Serena, Wound Care Specialist
Please send Dr. Serena your questions regarding wound care for an ulcerated hemangioma or other vascular birthmark, tumor, or syndrome that requires wound care.
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. Susie Astner, European Laser Specialist
VBF's Ask the Laser Doctor offers expert advice on laser treatments for all vascular birthmarks by Dr. Susie Astner.
Dr. Denise Metry, PHACE Syndrome Specialist
If you have any questions regarding this syndrome, please ask Dr. Metry.
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.
Elissa-Uretsky Rifkin, Midwest 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.
Kymberly Stephens, Licensed Associate Counselor
Ask our expert Kymberly Stephens about issues stemming from prominent birthmarks, disfigurements, or image related issues associated with genetics, trauma, burn or accident situations.
Nancy Roberts - Make-up Specialist
Ask our expert Nancy Roberts, Co-Creator of Smart Cover Cosmetics (www.smartcover.com), your questions about make-up.
Linda Seidel - Make-up Expert
Ask Linda Seidel your questions about make-up.
Zeina Tannous, M.D., Laser Dermatology Expert
Ask our expert Dr. Tannous, your questions about laser dermatology.
Anna Duarte, M.D., Florida Expert
Ask our expert Dr. Duarte, your questions about receiving treatment in Florida.
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

I
found out about a dermatologist in my area that knew about hemangiomas,
so I took Christine to see him when she was 3 months old. He took
pictures of her hemangioma, as it grew, every 4 weeks; yet offered
no treatment options. By the time she was 7 months old, the lesion
was the size of a golf ball. Her lower lip hung open and the hemangioma
began migrating toward her chin. Then, someone from work told me
about an expert in Boston. Christine was 7 ½ months old when I took
her to see him. He said I should have gotten her there sooner so
she could be treated with steroids. I was devastated to find out
that there were treatment options and a window of opportunity in
which the steroids would be effective, and I had missed that window.
I asked him why the pediatrician didn't tell me about this. He said
that vascular birthmarks remain the most misunderstood anomaly in
the medical field. He said there were only a few doctors who could
accurately diagnose and appropriately treat these lesions. He put
Christine on steroids, but they didn't work - it was too late. Her
only options were multiple surgeries, or nothing. The "nothing"
option was not an option to me.
That
was October of 1994. In June of 1995, I sent Christine's pictures
to Dr. Milton Waner. Remember, in 1995 there was no Internet. There
was also no book on hemangiomas or other vascular birthmarks for
parents, there was no international foundation and very few physicians
who knew how to diagnose and treat these lesions. Dr. Waner called
me within one week of sending him Christine's pictures. He told
me, "I can have your daughter looking normal in a single two-hour
out-patient procedure." I knew that God had answered my prayers.
Christine had her surgery the following month, when she was 18 months
old. True to his word, two hours after the surgery began, Dr. Waner
gave my daughter a normal lip. We didn't even recognize her because
we hadn't seen her with a normal lip since she was six weeks old.
Right then and there I knew Dr. Waner was the one I was going to
write the book with.
Christine
is perfect today. You can see from her picture that there is little
sign that there ever was a tumor the size of a golf-ball on her lower
lip. VBF has networked over 20,000 children and adults into medical
treatment (as of December 2004). In 2001 I authored a chapter in a medical
textbook on the subject of vascular birthmarks of the head and neck
(through a grant that we received from the Ronald McDonald Charities
of the Greater Albany, NY area, we were able to donate 500 copies of
this medical textbook to 130 medical schools in the United States and
Canada), and in March of 2000, I was the only layperson to present,
as faculty, at the American Academy of Dermatology Conference. Today,
I am considered the lay expert in the world on these lesions. An honor
earned from a promise that I made to God. A promise that I still keep
because there are still 40,000 children born each year with a vascular
lesions that requires the opinion of a medical specialist. In the summer
of 2005 I was matriculated in a PhD program. My dissertation will focus
on vascular birthmarks. My goal is to see that every primary care physician
is educated to identify vascular birthmarks accurately and to make the
appropriate treatment referral. I am also interested in and working
on vascular tumor research with our team of top notch research experts.
Finding the cause will inevitably lead to the cure and we are very close
to discovering the cause. I believe, as does our research team, that
this generation will see a cure. 





















