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.
Vascular Meeting in Madrid
Títle: “Scientific Advances in the diagnosis and treatment of infantile hemangiomas and vascular anomalies”
Date: 23rd September 2011
Place: Fundación Ramón Areces. C/ Vitruvio 5. Madrid
Inscription: free and open
Coordinators: Ignacio Sánchez-Carpintero and Ricardo Ruíz-Rodriguez
Web: www.seav.org
Alderhey Childrens Hospital Eaton Road
Liverpool
Beginning in January 2009, Dr Waner will be visiting Liverpool on a
regular basis to see patients and perform sugeries, working in conjunction
with Mr Liew Consultant plastic surgeon.
We have a large vascular birtmarks service including a multidisciplinary
team and a large vascular service.
Patients may contact:
cath.gorst@alderhey.nhs.uk
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.
Cause of Port Wine Stain/SWS Identified in Recent Study
Or download the pdf
Medical News: Hemangiomas Erased With Propranolol
The Vascular Birthmark Foundation's
2010 “Mark of Beauty” Gala
And the 2010 Vascular Birthmarks Conference with Dr. Roy Geronemus and
The Laser & Skin Surgery Center of New York
A Huge Success
Friday evening October 8, 2010 was a beautiful night in NYC for our 2nd Mark of Beauty Gala. The weather was perfect, the music (songs by our own soloists and the cast from Wanda’ s World) was amazing, there were over 220 in attendance and we were able to sponsor a number of families for our next conference due to the net proceeds from the event. Everyone commented that it was an incredible experience. We were also thrilled to announce that we have reached over 50,000 families who have been networked into treatment since 1994.
VBF was proud to announce that Dr. Gregory Levitin was honored as our 2010 Physician of the Year at our gala. In addition, our 2010 Service Awards were presented to: Saige Cavayero (VBF Student Rep), Dr. Geronemus’ s staff at the Laser & Skin Surgery Center of NY, Donna and Evan Ducker for their Buddy Booby Read-a-Thon, and Dr. Geronemus was presented with the Buddy Booby Award for his outreach to children and adults with birthmarks all over the world.
Read More and Check Out the Photos
VBF Launches Day of Awareness - We need 25 families
Thank you for your support of VBF and the VBF International Day of Awareness.
Many of you have participated every year, since its inception on May 15, 2004.
Families and individuals have hosted annual bake sales; garage sales; sold stickers,
bears and bracelets; celebrated a birthday by hosting a party for VBF; were
featured in newspaper and magazine articles and local television news programs
– the list goes on…
There is really no proper way to thank each and every one of you for support,
and for raising awareness of vascular birthmarks and the associated syndromes
and conditions. VBF has one amazing support network.
As you know, the downturn in the US economy has had an impact on all aspects
of life, including charitable giving. Donations to VBF are down 40 percent,
while the free services VBF provides to patients and families have continued
to increase. For this reason, your continued support of Day of Awareness is
more vital than ever.
If you haven’t participated in VBF Day of Awareness, please join the
VBF family of tradition and giving by hosting an event in your community: http://www.birthmark.org/awareness
Children
with birthmarks have met this challenge by becoming active participants in raising
awareness. Saige Cavayero, now in college, serves on the VBF Board and designed
and sold bracelets for Day of Awareness. Saige also designed a poster to highlight
the 2010 awareness campaign.
Elizabeth Peters sold stickers for a “Wall of Fame”, Gabriella
Gomillion donated her own toys to sell and raise funds, Laura and Heather Toulson
hosted a lemonade stand, Evan Ducker wrote a book that launched the “Buddy
Booby’s Birthmark International Read-Along”, and Owen Dreger hosted
a read-along at his school: complete with a play performed by a class at his
grandmother’s school.
VBF President and Founder, Dr. Linda Rozell-Shannon, along with VBF Executive
Assistant Basia Joyce, VBF Office Manager Lauren Palmateer and VBF Board member
Lianne Chase, are organizing the second annual VBF 5K Run/Walk in New York.
VBF Board members Danielle Vlahos and Rose Shea will host a walk/run in Boston.
VBF Board member and wife of VBF Expert Dr. Stuart Nelson, Peggy Nelson, is
hosting a wine tasting event in California along with Peter Zellner and Lauri
Firstenberg.
Annual awareness participants include: VBF Board members Brian and Natalie
Bolinger, hosts of the Texas Hold ‘Em and Auction; Jan and Andrew Dreger
(Owen’s parents) host Campbell’s Boat House for VBF at their family
restaurant; Robin Houwman sells pendants to raise funds for VBF and other birthmark
organizations.
VBF would also like to acknowledge the support of members like Jill and Paul
Brown whose daughter Aslynn underwent surgery for a massive hemangioma, and
VBF Honorary Chairs Frank and Barbara Catalanotto whose daughter Morgan had
a hemangioma. Like so many parents of children with birthmarks, their efforts
on behalf of VBF are outstanding.
It’s never too early to plan your event! Visit the VBF Day of Awareness
website today to register your event, or for ideas on how you can help. Here
are some helpful links to get you started:
· VBF Day of Awareness website: http://www.birthmark.org/awareness
· Register your event and Shop VBF to order materials, all in one
easy step: https://birthmark.org/secure/shopdoa.php
· “Tell Your Story”. Share your experiences with other
families: http://www.birthmark.org/awareness/story.php
Remember, May 15 is Day of Awareness, but events can be held any time during
the year.
THANK YOU VBF FAMILIES AND FRIENDS!
Bags for Birthmarks
You
can help to “Sponsor A Family” so that they can attend
the VBF annual medical conference and receive a treatment plan. Donate
a new or gently used high-end, vintage, or designer handbag or bid
on one at www.birthmark.org.
Both ways help! Tell your family, friends, or colleagues that they
can help too by donating or bidding on a handbag
To donate a bag,
click here, fill out the form, and mail it to us.
To
get a bag, click here.
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
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
Interview with our Greek Surgeon Dr Tombris
