Port Wine Stains and Women:
What You NEED To Know If You Have A Port Wine Stain.

This web-site is not intended as medical advice- it is information for women who have port wine stains.
Always consult your physician before making any decisions about your medical care.

My name is Erin Rosas, I am a mother of two.
I was born with a "Port Wine Stain" that covers my left arm, hand, chest and back.

After becoming very ill in 1996 during the pregnancy and birth of my second child, I began searching for the reason why my birthmark arm had become swollen, painful and was changing size and color. What I have learned after years of research is that the medical community still knows surprisingly little about medical conditions related to Port Wine Stains and the dangers that can be involved for some of the women that are affected.

Many women, like myself, had no known trouble with the birthmark until pregnancy or hormone therapy. I have created this Web-Site with the intention of increasing awareness and educating women that have these capillary malformations to the hidden dangers that are not so commonly known.

My intent is not to frighten but to inform and If you have a Port Wine Stain and have some concerns, it is important to find a doctor you feel comfortable with and discuss it with them. This is a very rare condition, but it does happen. 3 in every 1,000 people are born with a Port Wine Stain.

I have Klippel-Trenaunay Syndrome resulting from my congenital Port Wine Stain.

Klippel-Trenaunay Syndrome is a triad of hypertrophy ( the limb gets larger), Port Wine Stain and usually either an absence or duplication of a venous structure underneath. The symptoms vary from person to person and no two cases of KTS are identical. Often, the diagnosis is elusive.
Klippel-Trenaunay-Weber or Parkes-Weber usually includes a "fistula" or an abnormal connection between and artery and vein and may have cardiac involvement due to the extra stress on the heart.
I have found that most women with these types of birthmarks do not know they are susceptable to very serious hormonal side effects, the most common being thrombotic events (blood clots) resulting from childbirth or hormone therapy like oral contraceptives
Because of these inherent risks, it is recommended that women with these capillary malformations:

DO NOT USE BIRTH CONTROL PILLS.

According to the January 1998 Mayo Clinic Klippel-Trenaunay Spectrum and Management Article, Women should be also warned of exacerbation of symptoms during pregnancy. A large number of women with these problems have expressed to me the many difficulties getting medical care and treatment. I have experienced it first hand and live with the illness and it's very complicated and exhausting symptoms every day.
Because of my own personal experience with the Syndrome, for nearly three years I have been devoting most of my time to developing research projects including a survey currently being studied at New York University.

The Sturge-Weber foundation will be funding my effort to distribute my brochure to every OB/GYN office in the United States explaining the need to educate women with Port Wine Stains on hormone therapy and childbirth risks and complications. I am also looking to do research on other medical conditions and their relationship to Port Wine Stains.

Please contact me to share your experiences- or to provide me with any information and ideas. Through knowledge and persistance, changes are made.