Joie Davidow reveals the story of her birthmark to help others.

Joie Davidow co-founded one of America's biggest weekly papers and was the editor-in-chief of L.A. Style magazine. But beneath the fashion and glamour, Davidow was hiding a painful secret - a hand-sized birthmark, called a port wine stain, which covered much of her face.

"When I was really little I didn't know there was anything wrong with my face until I overheard someone say, 'It's too bad about this little girl's face,'" recalls Davidow. "After that I never wanted to go back to school again."

To help her daughter understand and give her strength, Davidow's mother told her the palm-shaped mark on the left side of her face was from being touched by an angel and that this mark was what made her special and beautiful.

"By second grade this wonderful story was eclipsed in my mind by the many unkind nicknames kids made up," Davidow says. "It stays with you - for the rest of your life no matter what your parents do to counteract it. So I felt like the Bride of Frankenstein."

Davidow is not alone.   Studies indicate that many individuals of the estimated one million Americans with port wine stains are more likely to suffer from lower self esteem and have problems with interpersonal relationships.

In her recent book, Marked for Life, Davidow openly discusses the shame she felt over her port wine stain.  "In the beginning telling my story was surreal," Davidow admits. "Because I was used to hiding this secret for so long. But once the secret is out it's out. Once it's not a secret any more you're not carrying it around. Everyone has their own version of a port wine stain. Mine was literally right smack on the front of my face."

A congenital defect, port wine stains are a collection of tiny blood vessels underneath the skin that for whatever reason proliferate in an uncontrolled fashion. The most likely hypothesis is there is an absence of neural tissue (nerves) in the skin in those areas where patients develop the birthmark.

"We have an article about to publish in Dermatological Surgery where we actually measured the amount of neural tissue in port wine stains and in normal skin and found that there was a dramatic reduction in neural tissue in the area affected by port wine stains," reports Dr. J. Stuart Nelson, professor of surgery and biomedical engineering, Beckman Laser Institute at the University of California, Irvine. "We believe that it is this absence of neural tissue that allows the blood vessels to grow uncontested and uncontrollably."

Complications

Davidow endured the stares and constant questions until her sophomore year in college when a new makeup from Max Factor became available.

"It was my first normal interchange with people who hadn't met me," Davidow says. "Just being treated like everyone else when I walked into a room, instead of people wondering what happened to my face, was so different that I became addicted to the makeup."

But hiding the problem is only half the battle. A very common misconception is that a port wine stain doesn't have health consequences, but it does.

"It's not just cosmetic," Davidow states. "By the time you are 60, it can be serious. Many people with port wine stains develop glaucoma if the birthmark is on the eyelids, which mine is. Luckily I have not developed this problem. But I did develop these little bumps that if you touched them would bleed for hours."

These "bumps" are caused when the blood vessels grow up toward the skin surface. Nelson says that these vascular nodules tend to bleed very easily with incidental trauma, are susceptible to infection and can cause moderately severe episodes of hemorrhage.

Blood vessels can also grow into the underlying soft tissue, muscle and bone, causing abnormal growth and asymmetry.

Davidow says she was fortunate that right when her birthmark was progressing and becoming pebbled and bleeding doctors began experimenting with the first lasers.

"I was part of the first FDA experiments," Davidow recalls. "Back then they were using a ruby laser which scarred me badly - I had like gullies in my face from where the heavy scabbing had taken place."

Nelson says the ruby laser and subsequent argon lasers were ill-suited for use in treating port wine stains. The red light emitted by ruby lasers could not be properly absorbed by the red blood vessels. And although the argon laser blanched port wine stains, there were scarring problems that were in many cases worse than the birthmark itself.

Technological advance

Selective photothermolysis is the concept that short pulses of light are able to selectively destroy the blood vessels without damaging the normal skin. The problem with the argon laser was it couldn't deliver a short enough pulse of light to just heat up the blood vessel and not damage the normal skin.

"The pulsed dye laser is a yellow light source that we are able to pulse much shorter - on the order of a millisecond," Nelson explains.  "This shorter pulse allows us to heat up just the blood vessels and save the normal skin and is now basically the standard of care for port wine stains."

A tissue-sparing technique developed at Beckman utilizes cryogen spray cooling. Right before the laser pulse is delivered the most superficial layer of the skin is selectively cooled, allowing doctors to deliver much higher light dosages of the pulsed dye laser.

"I had six treatments which lightened up the port wine stain considerably," Davidow says. "Thanks to all these treatments my birthmark for the moment is flat and light enough to be covered up fairly easily with makeup. I got excellent results for someone my age seeking treatment, but I will have to keep getting touch-ups."

But infants often achieve remarkable results.

"In our experience, the younger the patient is treated the better," Nelson says. "We actually treat infants as young as six weeks. One of the reasons why we do this is the younger the patient -- the smaller the blood vessels. As you get older the reason why the birthmark changes from light pink to darker red or purple is because the blood vessels gradually become more dilated. If you can intervene when the blood vessels are small, then your opportunity to remove the birthmark is much higher."

While the pulsed dye laser is achieving good results, Nelson says more research is needed to develop imaging techniques so blood vessels can be targeted better and treatment optimized on an individual patient basis. "We have optical Doppler tomography and infrared tomography which are getting there, but we still need higher resolution so that individual blood vessels can be imaged. In other words, we know what the enemy is."

For Davidow, that enemy was often cruelty and shame.

"What I am attempting to say in my book is that whatever shame you are carrying or whatever secret you feel is too awful to tell - tell it," Davidow urges. "It's not as bad as you think. Most people are not looking at you; they're looking at themselves. A birthmark doesn't have to change your life."

Spotlight Health is the leading creator of celebrity-featured health-issue awareness campaigns, connecting consumers with impassioned celebrities whose personal health battles can open eyes, dispel myths and change lives. Spotlight Health helps sufferers and caregivers meet the challenges of difficult health circumstances with understandable, in-depth medical information, compassionate support and the inspiration needed to make informed healthcare choices.

Created: 7/27/2003  -  John Morgan & Stephen A. Shoop, M.D.
Reviewed: 8/8/2003  -  Donnica Moore, M.D.