Expert's Corner

 

 

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.


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


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.


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 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!


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

 

 

Parent's
Corner



Information for Parents

DOA Logo
Don't Forget!
Every Day is a Day of Awareness for VBF!
Visit the VBF International Day of Awareness Website:
birthmark.org/awareness


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

Chapters of the VBF

VBF
VBF Europe
VBF Russia
VBF Spain
VBF Peru
VBF Latin American
VBF New Zealand
VBF Australia
VBF India
VBF Africa
VBF Asia
VBF Poland
VBF Philippines
VBF Vietnam
VBF Israel
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, c/o VBF Director of Information Services, PO Box 106, Latham, NY 12110.
  • Before you visit, email, or speak to a birthmark specialist, be sure to read our Checklist for Parents!
  • Dr. Rosen's Vascular Birthmark Information for Parents
  • 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.

RECRUITING SUBJECTS FOR A RESEARCH STUDY ON FACIAL BIRTHMARKS