Project Heart - PCOSupport Reaches out to Teens

PCOTeen, A division of the PolyCystic Ovarian Syndrome Association, is launching Project HEART -- Helping Educate And Reach Teens. This program will provide support and education to young women in high school and college who are dealing with PCOS. Project Heart focuses on increasing PCOTeen's Membership; creating a Big Cyster Program; hosting special events at PCOSupport Membership Conference; creating more media attention in magazine's target at teens and young women; doing community outreach to high school, college, and university healthcare professionals; creating a PCOTeen newsletter; and hosting online chats.

Project HEART is the brainchild of PCOTeen Director Heather Lubinsky. Lubinsky, a system administrator in a San Francisco Area company, has been an active volunteer member of the PCOSupport community for several years.

"Project HEART is something I had been thinking about for a long time. Because of the upcoming PCOSupport Conference and the teen-related events happening there, I decided to write down my goals for the project, " said Lubinsky. "I started with approximately 40 goals and condensed them down into the 7 goals that are the core of Project HEART."

It took Lubinsky a while to figure out a name. She came up with HEART on Valentine's Day. 

"I wanted a name that was easy to remember but stood for a lot more - I wrote down information that described parts of what I was doing and what I wanted to do."

Although all aspects of Project HEART are important to her, the Big Cyster program excites her the most. Similar to Big Sister Programs in other organizations, the Big Cyster program will team an older woman with PCOS with a teen or young woman who is just beginning to work on her PCOS-related health issues. Lubinsky herself wishes she would have had a big cyster to talk to when she was a teen.

Lubinsky herself remembers what it was like to be a teen dealing with PCOS issues.

"The weight gain was awful. I gained 40 lbs. in 3 months. In one year, I went from about 120lbs to 175 lbs. It was depressing. I had severe mood swings - and really had a hard time dealing with anything.

"My poor mom didn't know what to do" stated Lubinsky. "I started cutting school - lying and all sorts of stuff. My mom was really afraid I was on drugs. I did try them at times. I even tried to smoke because I had heard smoking helped you stay thin.

"I drank, stayed out late, and eventually started other, more destructive behaviors. Looking back - I can see that some of these behaviors happened because I needed to feel like I was good-looking and was an attractive, feminine, young woman.

"I kept spiraling downward. I lost parts of my memory. There are times I could not tell you what I did all day. I hadn't been at school but had I had no idea what I had been doing. I started thinking about death or running away a lot - I just couldn't deal with anything.

Lubinsky's story had a happy ending. At 17, she met and fell in love with her husband, Mathew. He helped her to start putting her life in perspective. Having someone who loves you no matter how I look helped to raised my self esteem. I was able to stop my self-destructive behavior.

"He listened and occasionally gave advice, guiding the way for me. But most importantly he supported me and listened. That is how I started getting my life back together. I want to help others do the same.

PCOTeen was founded in 1998 after Lubinsky, helped a young woman who was having difficulties and contemplating suicide because of her on-going problems with PCOS. Lubinsky realized that the complaint that she often heard from the adult women "I wish someone would have paid attention to what I was saying about how my body was working," was still very much an issue of young women with PCOS. She decided to do something to meet the needs of these young women. PCOTeen was created.

Lubinsky created the PCOTeen list and started a PCOTeen website. Young women with PCOS started coming to her site and PCOTeen has been growing steadily since then.

In October 1999, PCOSupport's Oregon Chapter hosted a regional conference at which PCOTeen hosted a teen breakout session. "The Breakout session was great. It was mostly attended by mothers of PCO Teens," says Lubinsky, "but we had a couple of teens there. Moms had the opportunity to talk to each other and figure out the best ways to help their daughters.

"That is where I first met Molly. Her daughter, Rachel, is now our Teen Newsletter Editor."

PCOTeen will have other projects in the future as its membership grows. In addition to the online resources PCOTeen already offers, Lubinsky envisions local PCOTeen support groups, meetings and resources to help young women get the information they need to cope.

PCOTeen is planning an outreach program to Medical and Education professionals. Lubinsky would also like to see PCOS become a regular topic in sex education courses.

"These courses already talk about STDs, pregnancy, cramps and pubic hair. Why not also explain the top 10 menstrual problems that woman can have and talk about what a young woman needs to do if she does not a "normal" menstrual cycle?"