
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

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.
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