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
No one knows why vascular birthmarks occur, but treatment guidelines
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
Alderhey Childrens Hospital Eaton Road
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:
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
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.
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
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.
Patients Who Have Used Propranolol Study
Cause of Port Wine Stain/SWS Identified in Recent Study
Or download the pdf
Medical News: Hemangiomas Erased With Propranolol
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
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
· “Tell Your Story”. Share your experiences with other
Remember, May 15 is Day of Awareness, but events can be held any time during
THANK YOU VBF FAMILIES AND FRIENDS!
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