I am writing this blog because I have come across a video that I think is great in helping to educate people on a condition that not many people know about, port wine stains. What is a port wine stain and what does it look like? Below is a definition of a PWS along with a picture:
American Academy of Dermatology:
The port-wine stain is another type of vascular birthmark that occurs in 3 in 1,000 infants. It is sometimes called a nevus flammeus, but it should not be confused with a hemangioma.  Port-wine stains appear at birth. They are flat, pink, red or have a purplish discoloration. Port-wine stains are found most often on the face, neck, arms or legs. They can be any size. Unlike hemangiomas, port-wine stains grow proportionately as the child grows. Over time, port-wine stains may become thick and develop small bumps or ridges. Port-wine stains do not go away by themselves, and are permanent.

Gabriella at 4.5 months

Many of you may already know but most do not unless you have met my daughter. My daughter Gabriella who is 4 was born with a port wine stain on the left side of her face. It covers most of the left side: going down half her nose and lip, covering all of her cheek, part of her temple and partly over her left eye. At the time of her birth we were told the best thing we could do for her was to see a pediatric dermatologist who specializes in vascular birthmarks. We are so lucky to live in the bay area as we discovered one of the best in the business was right in San Francisco (about 35 minutes away) at UCSF. When Gabriella was two weeks old we took her to see         Dr. Frieden and from there scheduled 7 laser treatments starting when she was 5.5 months old. Why laser treatments?

Complications of Port-Wine Stains per American Academy of Dermatology

Port-wine stains, especially those on the face, can have emotional, social, and economic complications. Port-wine stains on the forehead, eyelids or both sides of the face, can be associated with glaucoma and/or seizures. Glaucoma is an increased pressure within the eye that left untreated, can cause blindness. These complications occur in less than half of those with port-wine stains of the forehead and eyelids. All infants with a port-wine stain in those areas should have a thorough eye examination, and if indicated, further brain imaging.  Occasionally, there may be very gradual enlargement of tissues surrounding a port-wine stain, especially if it is affecting an arm or leg. All children with large port-wine stains should be followed for any growth problems.  With time, port-wine stains can develop small blood vessel growths called vascular blebs. These can bleed easily and may be removed.

What is a laser treatment?

Various methods have been tried in the past to remove port-wine stains, but none have worked well. New types of vascular lasers show the best results with the least amount of risk and side effects. Laser treatment of port-wine stains is FDA-approved and available at many dermatologists’ offices around the country. Laser surgery is performed on an outpatient basis. Several treatments are usually required, given at two month intervals. In a small number of patients, lasers can totally clear up the port-wine stain. They lighten the vascular mark 50-90 percent. For reasons that are not fully understood, a small number of patients will not respond well to laser therapy.

We started with laser treatments 01/06 and went every other month until about 9/06.  We stopped after 5 treatments because we felt Gabriella had got the most out of the treatments she could.  The lightening wasn’t happening anymore and we felt she had been exposed enough at this time to help with other potential complications.  Putting her too sleep each time was just so hard, we felt it was time to take a break and we could start up again when she was older.  As she has been growing up we have been trying to teach her how to answer the question “what is wrong with your face?”, “why is your face red” and the long stares from ADULTS and children.   She is doing great and each situation teaches us another way how to handle the lack of education.

As I said earlier, I am writing this today because I came across this link yesterday that I think can help educate the public on the PWS (birthmark) community. It came to me at a special time because Gabriella just went to UCSF yesterday (1/15/10) for her 6th treatment (first one in 3+ years).  The pictures below are from her treatment yesterday.  I also posted one after her 5 treatments from when she was a baby so you can see the difference.  I will post one every few days so you can see the healing process and how it works.  The video shows a young women who takes you through her treatment.  A great Port wine stain documentary to educate the public as well and show strength and courage in doing so.  So the next time you see someone with a large red, purple, mark on their body; now you know, it is just a birthmark.

Gabriella at 18.5 months after 5 treatments

December 09-Gabriella 4 years old 3+ years since treatments

Gabriella 1/15/10 4yr old 8 hours post treatment

Gabriella with best friend Ian-2 days post treatment

Gabriella day 3

Please go to photo’s to see latest pictures of healing process….