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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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

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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.

VASCULAR BIRTHMARKS FOUNDATION AND
BECKMAN LASER INSTITUTE PRESENT LANDMARK CONFERENCE

The 2009 Port Wine Stain and Vascular Birthmarks Conference was VBF’s largest conference ever, with more than 300 attendees from around the world and 25 medical experts. The conference was co-sponsored by Dr. J. Stuart Nelson of the Beckman Laser Institute and VBF, a global foundation dedicated to helping families afflicted with vascular birthmarks, tumors or syndromes.

 

Anne Comi (VBF SWS Expert) and Mike Steffano, Founder of Birthmarks.com	Dr. Nelson is pictured with conference attendees

VBF’s Co-Medical Directors, Dr. Stuart Nelson and Dr. Martin Mihm, both presented ground breaking results from research. Dr. Mihm presented the results of a study concerning the histopathology of hemangiomas that gives promise to developing a drug that will prevent them from growing. Dr. Nelson presented preliminary results of great interest to individuals with port wine stains. The current study results provide hope for a new combination drug and laser therapy treatment that will remove port wine stains.

The day care was full with children with birthmarks. Jennie Legary, VBF Adult Rep and Director of Musicians with Birthmarks read the Buddy Booby Book. VBF Adult Rep, Danielle Vlahos, pictured in the front, coordinates the annual day care center	Children attending the conference were treated to face-painting by a clown

During the conference, other experts presented the latest findings on research, diagnoses, and treatments for vascular birthmarks and related syndromes. In addition to the conference, an informal clinic was held where over 100 appointments were scheduled and conducted by four different birthmark teams.

VBF Co-Medical Director Dr. Martin Mihm, VBF President & Founder Dr. Linda Rozell-Shannon, VBF Co-Medical Director and Conference Co-Sponsor Dr. Stuart Nelson, and VBF's newest board member (West Coast Liaison), Peggy Nelson	Christine Shannon (daughter of founder/president) and Jenny Legary (VBF Board Member and Director of Musicians with Birthmarks) sang for everyone at the Friday welcome reception

The Vascular Birthmarks Foundation celebrated its 15th anniversary at the conference. We continue to raise money all year to actually pay for the hotels and meals for families to attend the conference. VBF is the only birthmark organization that provides free lodging and meals and will also waive all clinic and conference fees to families who request a waiver based on hardship. Your donations to “Sponsor a Family” will continue to help us to be able to pay for families to attend our conference and get a free treatment plan.

VBF also honored Dr. Robert J. Rosen, Co-Director, Division of Peripheral and Endovascular Intervention at the Lenox Hill Heart and Vascular Institute in New York, as its Physician of the Year.

Next year’s conference and our bi-annual gala will be held in NYC on October 8-9, 2010. Dr. Roy Geronemus, of the Laser & Skin Surgery Center of New York will be the 2010 Mark of Beauty Gala and Vascular Birthmarks Conference Chair.

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VBF Day of Awareness Events

VBF Board Members

• VBF Parent Rep Natalie and Treasurer Brian Bolinger – Texas, October 2009 – Silent Auction and Texas Hold ‘Em – Annual event and largest Day of Awareness fundraiser. Their daughter Nicole had a hemangioma.
• VBF Secretary/SWSC Co-Director - Tiffany Ethington and son Glen Ethington. Tiffany and Glen have an annual interview on noon news to raise awareness. Glen has Sturge-Weber syndrome/facial Port Wine Stain, and organized a newsletter and pen pal group for kids with birthmarks and their siblings/friends called “Glen’s Gang”. VBF Chapter Director/SWSC Co-founder Glenda Ethington also helped organize this annual event.
• VBF Executive Assistant Basia Joyce – VBF Walk/Run organizer. Basia’s daughter Anna had a hemangioma.
• VBF Director of Musicians with Birthmarks Jenny Legary – Jenny is putting on a show in NY. Jenny has port wine stain.
• VBF Parent Rep Danielle Vlahos – Each year Danielle hosts a “Jeans Day” at her workplace. Danielle’s son Cole had a hemangioma.
• VBF Parent Rep Lianne Chase – Team running in the VBF Walk/Run in NY. Lianne’s son Cody has a lymphatic malformation.
• VBF Legal - Barbara Rothaupt – VBF Walk/Run organizer
• VBF President Dr. Linda Shannon and daughter Christine Shannon – VBF Walk/Run organizer. Christine had a hemangioma on her lip and was the inspiration for the organization of VBF.
• VBF Parent Rep Elysa Baron and her daughter VBF Student Rep Saige Cavayero – Selling VBF Kids Who Care bracelets and organizing a team for the VBF Walk/Run. Saige was the inspiration for the bracelets. She designed them as a fundraiser for the first VBF Day of Awareness. Glen’s Gang and the VBF Kids Who Care program used Saige’s original design for adult bracelets and designed a blue/white swirl bracelet for children. Saige had extensive facial hemangioma.

• Donna Ducker and Evan Ducker – International Event - Buddy Booby Read-Along – Buddy Booby is the mascot for VBF. Mother and son authored the “Buddy Booby’s Birthmark” book about a booby bird with PWS. Evan Ducker has a facial PWS
• Lisa Burdick – Saegertown, PA Collection Box
• Allen Stotler – Sunrise, FL - Collection Box and VBF Starter Kits
• Arlin Diaz – Hopelawn, NJ - Collection Box
• Mike Jackson – Newton Centre, MA – VBF Starter kits
• Rita Jones - Grand Saline, TX - Collection Box
• Kate Steele – Dekalb, IL – Collection Box and VBF informational materials - In Honor of Aliyah Steele and VBF
• Karenina – Advance, NC - in Honor of daughter, Juliana Grubb – VBF informational materials
• Bianca Shemper – Hattiesburg, MS – VBF Stickers
• Kathy Wyrick – Lake City, FL – Article in local paper and informational pamphlets
• Jan and Andrew Dreger – 3rd annual Awareness Day Event at family
  owned/operated restaurant- Campbell's Boat House in Media, PA. Percentage of sales donated to VBF
• JoAnn Campbell – Media, PA - Buddy Booby Birthmark Read Along to students at St. Cornelius School. JoAnn is a teacher in Chadds Ford, PA. Also, video montage shown to students of grandson Owen Dreger.
• Rabbit Hill Nursery School – Springfield, PA - Buddy Booby Read Along to Owen Dreger's Pre-school class.
• Vanessa Beall – Aptos, CA – Collection Box – In honor of Lillie Nichols
• Christine Sylvester – Milwaukee, WI – postcard and sticker campaign to friends and family
• Kathleen Miller – Slingerlands, NY – Lunch and Learn, collection box – In honor of Camryn Shea Miller

• VBF Latin America - Andrea Domingues - São Paulo, Brazil - Medical Lecture – Each year Andrea hosts a meeting of People with Hemangioma and Linphangioma Brazil. The conference is organized by ABRAPHEL, a Brazilian association for people with Hemangioma and Lynphangioma. Andrea’s daughter, Gabrielle, has Proteus syndrome.
• VBF India - Santo Banerjee – Kolkata, West Bengal, India – Writing an article in the local newspaper. Santo’s son, Sumangal, has SWS.
• VBF Poland – Ewelina Ochab – plans pending
• Sturge-Weber Syndrome Community (SWSC) – Lexington, KY - Tiffany and Glen Ethington – Tiffany and Glen have an annual interview on noon news to raise awareness. Glen has SWS/PWS and organized a newsletter and pen pal group for kids with birthmarks and their siblings/friends called “Glen’s Gang”.
  • Glenda Ethington , SWSC – distributing informational pamphlets to local hospitals/doctors.

It's never too late to register for the 2009 VBF International Day of Awareness. Our annual celebration for Awareness is on May 15, but events can be held at any time during the year. Join these dedicated families in supporting VBF and raising awareness for vascular birthmarks. Visit the VBF Day of Awareness website today for more details and to register your event. With your help, we are making a difference!
http://birthmark.org/awareness

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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.

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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).

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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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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

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Interview with our Greek Surgeon Dr Tombris

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