
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


After
our first adoption experience, we talked about adopting again; this
thought was always in the back of our minds. In May of 2004 I had
an overwhelming feeling, that I can't explain, to go to a website
that I had visited many other times. This website lists international
"waiting children." When I opened the website I saw a
small picture of a little girl, so I enlarged the picture so I could
really see her. When I saw her eyes, I felt an instant connection
to her and felt that she was my daughter. She had a hemangioma on
the bridge of her nose and over one eye. I called my husband and
asked him to look at the picture and he said, "she's a cutie",
and he also knew that this was his daughter. About a week later
I said to my husband "should I call the agency and see about
the little girl?" His response was an overwhelming "yes"(he
always wanted to adopt again). I called the agency but found out
that some other families were considering adopting the little girl.
Even so, my husband and I began researching hemangiomas to find
out all we could about them. Neither of us had any previous knowledge
about them, but we quickly educated ourselves. While researching
hemangiomas, I ran across a website about a foundation that Linda
Shannon started called the Vascular Birthmark Foundation. About
a week later I called back to the agency to see if anyone had made
a decision about the little girl. The lady at the agency told me
that she thought this child would be easy to adopt. However, all
the other families had turned her down. The prospective families
had received a wide variety of medical opinions from possible brain
damage to vision problems to her requiring major cosmetic surgery.
The adoption agency said that they were going to have to send her
back through the system, but offered to let me consider another
child. I explained that my husband and I were not actively seeking
an adoption at this time. Although, we felt a connection to THIS
little girl and knew that God had presented this to us. We knew
that if it were meant to be she would be our daughter. The lady
at the agency didn't want to send me the video because she said
"I know you are going to call me in a couple of days and say
no." After some pleading and begging she agreed to overnight
the video and pictures to me. In the meantime, I started calling
for appointments to get some medical advice. Several doctors turned
me down in my area. They didn't want to try and make a judgment
based on a video or picture. Then I remembered Linda Shannon's website
and found a link to doctors on this site. One of the doctors on
her list who specializes in vascular birthmarks had an office about
5 miles from our house. I called and they were happy to see us.
Our
family is hoping to travel at the beginning of December 2004 to
bring our daughter home. Her new name will be MacKenzi XiaFang.
In China there is an Ancient Chinese belief that "An invisible
red thread connects those who are destined to meet, regardless of
time, place or circumstance. The thread may stretch or tangle, but
never break." We believe as a family that God had a plan for
our lives and part of his plan was for us to adopt our two daughters.
They were meant to be part of our family from the beginning. We
have a "red thread" connection with both of our daughters,
even before we knew who they were.
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