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:

• Hemangiomas, the most common type of vascular birthmark
• Port Wine Stains
• Venous Malformations

No one knows why vascular birthmarks occur, but treatment guidelines are changing.

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REGISTER NOW
The Vascular Birthmarks Foundation
along with the
The Vascular Birthmark Institute of New York

Present the 2008 Vascular Birthmarks Conference
and the “Mark of Beauty” Gala

Lisa and Greg Fortunoff, Mark of Beauty Gala Chairs and Sponsors	Edward Strausman 2008 Conference Honoree

We are very excited to announce that the 2008 Vascular Birthmarks Conference will be held in New York City on Saturday, November 15th. This year the conference is one full day only, with a fundraiser the evening before the conference. For the first time in VBF history, we are having the “Mark of Beauty” Gala to jointly benefit VBF and the VBI (Vascular Birthmarks Institute) at Beth Israel. Dr. Milton Waner and Dr. Alex Berenstein are the 2008 Co-Directors of the conference and Lisa and Gregory Fortunoff are the Friday evening Gala Chairs and Event Sponsors. The “Mark of Beauty” Gala will take place at the incredibly beautiful Hudson Theatre located at 145 West 44th Street from 7pm until 10 pm on Friday, November 14th. The conference will take place at the Beth Israel Union Square Auditorium, Phillips Ambulatory Care Center, at10 Union Square East between 14th and 15th Street on November 15th. It will start at 8:30am, with day care drop off and conference registration/check-in starting at 7:30am.

Read more

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See how our Chapter celebrated VBF Day of Awareness last year!

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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.

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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

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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

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Interview with our Greek Surgeon Dr Tombris

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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