Expert's Corner
VBF NEEDS LANGUAGE TRANSLATORS
- SPANISH, PORTUGESE, AND ASIAN LANGUAGES Babies with Birthmarks™Our newest program - guidelines for physicians to follow to diagnose and treat vascular birthmarks with the earliest intervention. Recent Medical Papers and ResearchVBF has a great deal of research available, including
a bibliography for offline research. |
Hemangioma InformationApproximately thirty percent of all hemangiomas are visible at birth. The remaining seventy percent become visible within one to four weeks after birth. Hemangiomas occur 5 times more often in females than in males and occur predominantly in Caucasians. Low birthweight infants (less than 2.2 pounds) have a twenty six percent chance of developing a hemangioma. The cause of hemangiomas has not been determined, and neither parent should bear guilt over the occurrence or appearance of one of these birthmarks. The important thing to remember is that accurate diagnosis and early intervention is key. Hemangiomas, like people, come in all shapes and sizes. Some are small and hardly noticeable, while others are large and disfiguring. Approximately eighty three percent occur on the head and neck area.
The remaining seventeen percent appear throughout the the rest of
the body (both externally and internally). In the early stages some
appear either as bluish or reddish spots or flat patches. Rarely
is a hemangioma fully grown at birth. Hemangiomas that are flat and appear reddish in color are called "superficial" and those that are deep beneath the skin and appear bluish in color are called "deep" hemangiomas. When a hemangioma is both deep and superficial it is called a "compound" hemangioma. The correct diagnosis is critical for proper treatment. Hemangiomas can grow for up to 18 months and then begin a long slow regression known as involution. This involution can last from 3- 10 years. While all hemangiomas eventually 'involute" the result is not always cosmetically acceptable. Early intervention has been shown to reduce the need for corrective surgery after "involution" has occurred; or to, at least, minimize extensive corrective surgeries in the future. Psycho-social scarring which occurs when a child has been forced to live with a facial deformity until "involution" has been completed can be avoided by early, aggressive intervention. In some cases, hemangiomas can be life threatening or severely problematic (interfering with eating, breathing, seeing, hearing, speaking, etc.) and require immediate aggressive intervention. Hemangiomas that grow internally can be very dangerous. They are difficult to detect and when they are detected, the infant is often in need of immediate intervention. Internal hemangiomas (referred to as visceral) occur in the liver, intestines, airway and brain. Infants who have what is referred to as hemangiomatosis ( multiple hemangiomas) are suspect for internal lesions. When an infant has more than 3 hemangiomas, an ultrasound should be done of the entire body to rule out internal lesions. Jaundice may be a sign of liver hemangiomas, blood in the stool may be a sign of hemangiomas on the intestines and stridor (croupy cough and difficulty breathing) may be a sign of airway hemangiomas. If you need additional resources or support with hemangioma related problems, please try posting in our Discussion Forum. The VBF Birthmark Fact Booklet is here (pdf) Need a medical opinion? Ask the Expert! Ulcer Care and Treatment Guide (pdf) How
to Appeal an Insurance Denial or |
VBF
Bags for Birthmarks Get
a Bag Seattle Children's Hospital Vascular Anomalies Center Update (pdf)
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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. |
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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)
CBS
Early Show
VBF Gets Referenced in Buddy Booby Birthmark Articles
CBS
Early Show
If you think your child has a hemangioma Click
Here...
If you think you or your child has a port wine stain Click
Here...
If you think you or your child has a venous malformation Click
Here...
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: 212-636-3977
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
VBF
VBF Europe
VBF Latin American
VBF New Zealand
VBF Australia
VBF India
VBF Africa
VBF Asia
VBF Poland
VBF Philippines
VBF Vietnam
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.
Venous Malformation Research Treatment 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!
Dr.
Linda and her daughter Christine 2008 - The Founder of VBF Tells Her Personal
Story
Meet the Webmistress
Missy Scott
Missy has worked with VBF for nine 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.