Expert's Corner

 

Ask the Doctor


The Ask The Doctor service of VBF Europe is provided on a volunteer basis by physicians who work with VBF. Please use this service only if you are unable to find the information you need at our website.

Ask the Founder


VBF Announces "Ask The VBF Founder." Linda Rozell-Shannon is the leading lay expert (non doctor) in the world on the subject of vascular birthmarks.

 

Babies with Birthmarks™

Our newest program - guidelines for physicians to follow to diagnose and treat vascular birthmarks with the earliest intervention.

Recent Medical Papers and Research

New Research Out of Boston


Dynamic Cooling Paper by Dr. Nelson and Wangcun Jia


Arterio-venous Malformations Powerpoint Presentation


PWS paper by Dr. Mihm and L. Rozell-Shannon


SWS Glaucoma Facts by L. Rozell-Shannon and Dr. Fay

Test for Birthmarks

Psychosocial and Emotional Issues for Individuals with a Port Wine Stain

Simple things you can do to manage KTS (Dr. Delfanian and Linda Shannon)

Ulcer Care and Treatment (pdf)

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

Shai PearceI 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.

ShaiAfter 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.

Shai, todayLiving 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

Dr. BerensteinAlejandro 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

 

 

Parent's
Corner



Information for Parents

Good Search

What if the VBF earned a penny every time you searched the Internet? Now it can! GoodSearch.com is a new Yahoo-powered search engine, with a unique social mission... every time you use GoodSearch, money is generated to support the mission of VBF. Just go to www.goodsearch.com and be sure to enter the Vascular Birthmarks Foundation as the charity you want to support. The more people who use this site, the more money we'll earn so please spread the word! Go to http://www.goodsearch.com

If you think your child has a hemangioma Click Here...
hemangioma
If you think you or your child has a port wine stain Click Here...
Before and after of port wine stain
If you think you or your child has a venous malformation Click Here...
Before and after of venous malformation

Good Search

What if the VBF earned a penny every time you searched the Internet? Now it can! GoodSearch.com is a new Yahoo-powered search engine, with a unique social mission... every time you use GoodSearch, money is generated to support the mission of VBF. Just go to www.goodsearch.com and be sure to enter the Vascular Birthmarks Foundation as the charity you want to support. The more people who use this site, the more money we'll earn so please spread the word! Go to http://www.goodsearch.com

2003 Port Wine Stain Conference Videos and 2005 PWS Conference Audio CDs Available

2003 PWS Conference....4-PART VIDEO SET...now discounted from $69.99 to just $29.99 PLUS $5.00 SHIPPING AND HANDLING This is an important addition to your medical library and is appropriate for both physicians and those interested in learning more about vascular birthmarks. Learn from the convenience and comfort of your home or office. This set contains lectures from world-renowned medical experts in the field of Vascular Birthmarks. Please click here to place your order. (pdf order form) There are only a few sets remaining. Hurry while supplies last.

2005 PWS Conference...3 CD Audio Series...is available for a donation of $49.99. of which $30.00 is fully tax deductible. Listen to the incredible presentations by world experts in the field of PWS, Sturge-Weber-Syndrome and Klippel-Trenaunay Syndrome as they discuss the latest research and treatment information. This presentation is the most current information you will find on this subject. There is a limited supply. This set will be sent to you by UPS within two weeks. To buy this set, click here. (pdf order form)

 

VBF Chapters and Partners

VBF

VBF Europe

VBF Latin American

VBF New Zealand

VBF Australia

VBF India

VBF Africa

VBF Asia

Sturge-Weber Syndrome Community

SWSC-Canada

Partners

Anomalie Vasculaire Site for French speakers worldwide, and friend of VBF that offers support and information about vascular birthmarks


Publications for Parents:

  • VBF Vascular Birthmarks Brochure - Download and Print - A comprehensive brochure describing all vascular birthmark types, syndromes and treatment options. To print, click here (you will need the Acrobat Reader to view and print this document).
  • Doctor Visit Survey Have you been seen by a doctor to assess a vascular birthmark? Please click here and complete our survey. This survey will be used to provide feedback to the doctors about the information and treatment they provide to families affected by a vascular birthmark. Complete your survey and mail to Corinne Barinaga, VBF Director of Information Services, 17309 NE 29th St., Vancourver, WA 98682.
  • Before you visit, email, or speak to a birthmark specialist, be sure to read our Checklist for Parents!
  • Port Wine Stain Leaflet (pdf) (Word)
  • Hemangioma Leaflet (pdf) (Word)
  • Psychosocial and Emotional Issues for Individuals with a Port Wine Stain
  • Simple things you can do to manage KTS (Dr. Delfanian and Linda Shannon)

You will need Adobe's Acrobat Reader to open and print the pdf documents. If you do not already have it installed, you can find it here.

You will need Microsoft's Word to open and print the Word Documents.

Parents' Stories

Read our Interview with Dr. Tombris!

Do you have any suggestions to improve the services we offer to our VBF families? Send us your comments and suggestions!