Advice for Transitioning to College with Hemophilia

Although Ben has not had any boys with hemophilia in his school, he knows all about the transition to college — and beyond — from his own experience.

"My advice is, make sure you are in control of your hemophilia, that you have your own medicine, that you can self-infuse, that you have your contacts with your doctors and insurance company," he says. "And then just have a great time at college."

When you have hemophilia, you do need to make sure all your support systems are in place — a good hematologist, good nurses, and a relationship with an HTC if possible.

"Don't forget you have hemophilia," Ben advises, "but don't use it as a reason for not being active or being a part of things. I certainly hope that people with any bleeding disorder just think of themselves as regular, wonderful people who can do whatever they want to do."

Patient Stories

Ben Shuldiner: No Excuses

Ben Shuldiner, Hemophilia Consumer

Ben Shuldiner has a basic life philosophy: when people shift their focus from what they can't do to what they can do, they can succeed. This philosophy applies equally to the teachers and students in the high school he runs, and people with hemophilia. Ben was born with severe factor IX deficiency.

Nevertheless, he graduated magna cum laude from Harvard in 1999, began his teaching career in England after winning the Stowe-Harvard Fellowship (an opportunity to teach at a prestigious British boarding school for a year), and co-founded his own high school in 2003. He also received the prestigious Jefferson Award for Public Service for "Greatest Public Service By An Individual 35 Years or Under."

Clearly, Ben's bleeding disorder is not holding him back. "Having hemophilia is certainly an important part of who I am," Ben says, "but you can live with hemophilia and succeed in life if you don't use hemophilia as an excuse."

Succeeding is Ben's message to his high school students, too. In 2003, he and co-founder Marisa Boan received a grant from the Bill and Melinda Gates Foundation to build a high school that reflected their vision of a fair public education system.

"I love education and working with children," Ben says. "When I started teaching, I was working in a poor-performing high school, but I loved it and I was able to do some great work. I realized very quickly that if I wanted to really make a change at the school level, I needed to be a principal."

Ben and his team of educators were selected to realize their vision of the "High School for Public Service: Heroes of Tomorrow" in Brooklyn, New York. The students are all minorities and take part in Title 1 (a program to provide education to low-income students). The school's graduation rate is 96%.

"We have an innate belief that every child can graduate and every child can go to college, and that once we as educators and society stop making excuses for why people fail and start talking about how people can succeed, things will change dramatically," says Ben.

Each student is uniqueIn addition to the focus on academia, all students in the school are required to perform 200 hours of community service in order to graduate. The school has classes in public service, farming and nutrition, as well as a one-acre fruit and vegetable farm that provides fresh produce for the community. Many of the students in the graduating class are the first in their families to go to college, a feat accomplished despite the fact that they came to Ben's school from poor-performing high schools, junior high schools and elementary schools.

"Each student is a unique story unto themselves, but what they represent is that in the end, poverty, where you live, and your background need not be hindrances," says Ben. "With hard work and determination, good support and a good school, kids can succeed."

Ben doesn't think of himself as a role model, but there are many people who think otherwise in the bleeding disorder community and beyond. After he was the keynote speaker at the National Hemophilia Foundation Conference in 2005, many families contacted him for advice, and Ben was generous about imparting his knowledge on how to live a full life with hemophilia. However, his real impact has been on the educational scene.
"People come to visit us on a weekly basis," he says. "It's great and it's incredibly flattering. What we try to do here is to help out other schools. Hopefully our little piece here will help impact better education around the country."

A lofty goal? Sure. But Ben Shuldiner has already proven that when excuses for anything less than extraordinary successes are not allowed, the sky is the limit.

Exerpted from Quest, Coram's magazine for bleeding disorder patients (Quest: February 2012, Issue 24).

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