Welcome to the European Chapter of the Vascular Birthmarks
Foundation, VBF Europe!
Every year in the United States, 40,000 children are born with a vascular
birthmark, 85% of which are in the head and neck area. Statistics show
us that the incidence is the same in other countries. These birthmarks
include:
No one knows why vascular birthmarks occur, but treatment guidelines
are changing.
Join
the VBF 2008 Day of Awareness Campaign
Tell Your Story
Help us Raise Needed Funds
Buddy Booby says, “Come in and see what’s new”.
Welcome to VBF 2008 International Day of Awareness: http://birthmark.org/awareness/
Look what’s new, VBF 2008 International Day of Awareness! We are
excited to launch our international campaign for awareness on May 15.
It’s the same day with a new look. Explore the new website and
join in the fun.
This grassroots campaign serves to educate the public about vascular
birthmarks and their related syndromes, and raise funds to support the
work of the VBF.
VBF International Day of Awareness officially takes place annually on
May 15, and is celebrated by hundreds of friends from around the world;
however, many events are conducted throughout the year.
Participants can have fun while working to help those affected by birthmarks.
Some past events include lemonade stands, garage sales, jeans day at
work, a birthday party fundraiser, awareness bracelets and VBF We Care
Bears sales, bake sales, sponsored marathons, Buddy Booby book read-along,
a penny drive – the possibilities are endless.
There is something for everyone, especially you!
So please make your plans to participate in this event. Once you have
registered your event, VBF will provide you with supportive materials
and offer any assistance we can to make this campaign enjoyable and
successful.
If you are interested in participating, visit the VBF International
Day of Awareness website, or write to Paige Salvador at BASPASTS@cs.com.
Save the Date
2008 VBF International Conference and Masquerade
The VBF International Conference will be held in New York City on
Saturday, November 15, 2008. Highlighting the conference are the top
physicians in the world on vascular birthmarks and the related syndromes.
Prior to the conference, on Friday, November 14, 2008, VBF is hosting
a Masquerade and Auction to benefit the work of VBF. This event will
include live entertainment from guest celebrities, as well as one-of-a-kind
and collectible auction items.
Information concerning registration and itineraries for these events
will be posted soon, so please check back for all the exciting details.
See how our Chapter celebrated VBF Day of
Awareness last year!
SHAI’S STORY: Living with Multiple Hemangioma
Meet Shai Pearce, our newest Representative for VBF Europe. Read her
incredible story of growing up with multiple hemangioma
I
don’t really know where to start this.. But here goes. I was born
in October 1990 and I seemed like a normal baby. However, when I was
six weeks old my parents started to notice little red marks on the right
side of my face and on the top right side of my back. They appeared
like little tiny scratches at first, but they soon began to get bigger.
My parents took me to the Doctor and he told my mum that they would
disappear, but he still referred me to a paediatrician at the hospital.
The marks soon swelled and I was diagnosed with Multiple Hemangioma.
It wasn’t able to be treated until it had grown to full size.
I had a large one on the right side of my face, from my eye to just
below my ear. One on my nose, lip, left ear, a huge one on my back which
was about the size of a football and also one in my knee that stopped
me from walking for a few months.
One night when my Dad was feeding me he noticed that I was taking an
extra hitched breath when breathing. I was taken to hospital again and
they discovered that I had one growing in my wind pipe, that was beginning
to block it and making breathing hard. The Doctor’s said that
this one could not be left, because eventually it would block completely
and I would probably stop breathing, so they gave me steroids to shrink
it. This worked, however I was then very prone to infections because
it had weakened my immune system.
After
it had finished involuting, I was left with very saggy skin on my face.
My back was still quite large, but it had shrunk enough for me to have
surgery. So at 2 ½ I had my first major operation to remove the
Hemangioma from my back. The operation was originally only meant to
last a few hours, however it ended up lasting 10! And I nearly had to
have a blood transfusion. My mum says she remembers telling my Dad that
she thought I was going to die and that it was an awful time. However
I made it through and I was left with a scar stretching along the top
of my back. The next operation I had was on my face. For this, they
had to cut my ear off, and pull the excess skin back behind where my
ear would be, and then put my ear back on. So I’m left with a
scar behind my ear. The Hemangioma was too large to get rid of completely,
so I still have a scar on my face. I also have a little bit of a fat
lip, but its hardly noticeable. My other ear that had it on had to be
completely reshaped because the Hemangioma had ruined it really, so
my left ear is different to my right. The one on my nose was completely
removed with no scarring. The one in my knee shrunk and went on its
own. In all I had about four operations, the last one I had was in year
3 at school. After this my surgeon said that they would have to wait
until I was 16, and then I could come back and see if anything more
could be done.
In April 2007 I went back to the same Surgeon and he said that I could
have another operation to tighten the skin up more as I had obviously
grown. So on July 5th I had the operation, and I was awake, which was
absolutely terrifying for me. However everything went well, and my scar
is now even smoother, which I am pleased about, but I will be returning
in June this year to see if there’s anything else that can be
done.
Living
with Multiple Hemangioma has been hard at times. Although I have been
lucky that I haven’t really been bullied about it. I think I owe
this to my Mum. She has always said to me since I was little that I
was no different to anybody else, and I was to take no rubbish from
nobody. My Mum made me a strong child and now a strong young adult.
She pushed me to do everything that I might find scary, especially with
scars. We dealt with people staring together because my sisters were
older than me, it was just me and my mum against the world when I was
little. I am insecure sometimes, but I’ve come to accept that
this is the way I look, and if anyone is ever mean to me about it, its
them with the problem, not me!
Me and my parents were so surprised when I found this website, I think
its brilliant because when I was going through this as a baby, there
wasn’t really anything for my parents. This site is great because
it enables frightened parents, or people like myself to come and talk
about their experiences and realize that there’s lots of people
out there who are going through, or have been through what you have.
It helps people not to feel alone, and that there is light at the end
of the tunnel.
Here are some pictures to show how it looked when I was a baby, and
how it looks now I’m 17.
VBF Names Dr. Alejandro Berenstein Physician of the
Year
Alejandro
Berenstein, M.D., was named this year’s recipient of the VBF Physician
of the Year award for his outstanding and innovative techniques in treating
massive, complicated, and often life-threatening vascular malformations
and hemangiomas.
Dr. Berenstein is the Director of Beth Israel’s Hyman-Newman
Institute for Neurology and Neurosurgery (INN) at Roosevelt Hospital
in New York City, a state-of-the art facility for the diagnosis and
treatment of neurological diseases and complicated vascular malformations
and hemangiomas. He is a pioneer in the field of Interventional Neuroradiology,
a specialty that utilizes minimally invasive procedures to treat conditions
related to the vascular system of the brain, head, face, spine, and
spinal cord.
Read More about Dr. Berenstein
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.
Read more here
Interview with our Greek Surgeon Dr Tombris
RECRUITING SUBJECTS FOR A RESEARCH STUDY ON FACIAL BIRTHMARKS
The Effect of Facial Hemangiomas on Psycho-Social
Development
If you are 14 years old or over and would be willing to answer three
short questionnaires, please volunteer for this research study.
This study is investigating the psycho-social impact of growing up
with an hemangioma on the face.
You must meet the following criteria to be in the study:
- Your birthmark must have been diagnosed as an hemangioma (either
deep, superficial or mixed), NOT a Port-Wine Stain or other type of
malformation.
- You did not receive any treatment prior to age 14 to remove, lighten
or reduce the Hemangioma.
- It must have covered at least 10% of the face (size of an egg)
and been visible to other people.
- You must have attended a public or private school. (not home schooled)
- You must be able to fill out the questionnaire without help from
another person.
All participants must sign a consent form, and if you are under 18
years of age a parent or legal guardian must sign and approve your participation
in the study.
All information is strictly confidential. Your answers will be sent
to the scoring coordinator anonamously (without your identity disclosed).
Elissa Rifkin, M.Ed.
Principal Investigator
studyvb@aol.com
