An Interview with Linda Rozell-Shannon

Sep 17, 2019 by

Michael F. Shaughnessy –

1) First of all, can you tell our readers a bit about yourself- and your education and experience?

Everyone calls me Dr. Linda. 

My name is Linda Rozell-Shannon, PhD. I am the President and Founder of the Vascular Birthmarks Foundation (VBF). We (VBF) are the leading not for profit in the world for children and adults affected by such vascular birthmarks as hemangiomas, port wine stains, venous malformations, etc.  I have a PhD in Medical Education. 

I established VBF in 1994 because my own daughter, Christine, was born with an Infantile Hemangioma. At the time there were no standards of care. I knew it would be my mission to close this gap. We work with the AAP on educating physicians, creating the only on-line program for physicians, and have also created the “iTeam” which is an International Team of the top doctors in the world who diagnose and treat these lesions and travel around the world with VBF on medical missions trips. We have been to Russia, India, Israel, Italy (twice), and Greece. We are slated for conferences in China, Poland, and Canada. 

2) Let’s start simple in this preliminary interview- what exactly is a Port Wine Stain?

A Port Wine Stain (PWS) is a vascular birthmark that is present at birth. On the side of the skin where there is no PWS, the blood vessels, normal blood vessels, are like angel hair pasta (very thin). On the side of the skin where there is a PWS, the blood vessels are like linguine (thick and irregular). 

That’s because “extra blood” is pooling in those vessels. A gene has been discovered in the past 5 years for Port Wine Stains indicating it is a genetic mutation. A PWS is pink to red in color. 

3) How often does a Port Wine Stain occur?

0.3% is often the quoted frequency for a PWS. There is no gender preference.

4) Do we know the causal factors?

Dr. Anne Comi and her team at the Kennedy Krieger Institute discovered in 2013 a somatic gene mutation that causes a PWS and its associated syndrome (Sturge Weber). Parents were set free when they learned about this mutation because it was now confirmed that they did not do anything to cause the PWS. 

5) Is there any specific treatment?

The “gold standard” of treatment is laser therapy, primarily the PDL (Pulse Dye Laser). The laser is “selective for hemoglobin (red) in the skin so it actually seeks out the PWS and “cooks up” the excess blood through a thermal process. The excess blood is evaporated and the vessel collapses, rendering a more normal appearance. 

Some PWS have tissue hypertrophy (overgrowth) and these can require surgery to debulk them. 

6) What about tanning, and the sun and vitamin D?

Most PWS laser treatment experts suggest someone with a PWS to avoid the sun and/or use a high SPF sunscreen at all time. The blood vessels in the PWS are already enlarged. The heat causes blood vessels to enlarge (engorge). Therefore, the heat and sun are not always conducive to a PWS. Tanning is also recommended to be avoided.  No mention at our meetings has been made of Vitamin D and PWS. 

7) Psychologically, what is the impact of a PWS ( Port Wine Stain )?

This is a loaded question. Nearly 60% of all parents have extreme anxiety of the vascular birthmark. The remaining 30-40% are indifferent. There are many studies on how 2 children raised in the same household can have differing perspectives on pain.  

There is another group of 40% that love their birthmark, even if it has medical complications. 

Many patient over the years have reported extreme bullying to someone living with a vascular anomaly. 

8) Obviously the more of the face covered by a PWS- the greater the impact- but does it ever occur in other or on other parts of the body?

75% are in the head and neck area and the remaining 25% are dispersed throughout the body (even the eyeball can have a PWS). 

9) What have I neglected to ask or where could our readers get more information?

There are many lasers coming on the market. Candela is the leading laser expert and having been inventing new devices every fee years. People will talk about using the NdYage or the Argon or some old version of the Apple computers. I can tell you with certainty that the lasers of today are 1,000% better than they were even 20 years ago. 

We hold monthly VBF Facebook Live sessions that we archive. We have several laser experts and one is leaving for private practice and the other one is smart, but you have to be in his world. 

Dr. Linda – I want to  thank you for this information and I hope that you will also agree to other interviews about hemangiomas and other venous conditions–MS

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