UW-Madison student pursuing piano career despite rare blood disorder

MADISON, Wis. - A University of Wisconsin-Madison student isn't letting hemophilia stop him from pursuing his dream of both performing and teaching piano, but an expensive medication is allowing him to do so. 

Kangwoo Jin, 36, along with about 20,000 Americans, is missing the blood-clotting protein. He has a severe form of the rare disorder, causing him to bleed spontaneously into joints and muscles. 

Three times a week, he injects himself with a preventative medicine that helps his blood clot. It stops almost all of his bleeds and is allowing him to pursue a doctorate in piano.

But the injection, which costs about $3,000, was only readily available to him through private insurance when he moved to the United States in 2009. 

"He didn't get this preventative treatment, he just treated in response to bleeds," said Stephanie Lovell, a nurse practitioner in the UW Comprehensive Program for Bleeding Disorders. "So he has joint damage as a result of those bleeds. It causes lasting effects inside of the joint that make you have arthritis and pain in your joints."

For 27 years, while growing up in South Korea, Jin was not able to get the injections he needed, pushing his dreams of becoming a classical pianist further from his reach.

"I have to practice, but when I practice, it gets hurt, but I cannot get enough medication. So yeah, I was trying my best, but in the meantime it was getting worse," said Jin. 

After using the injections for almost 10 years, you wouldn't be able to tell he has any health challenges when he plays, although he still has bleeding episodes when he practices for long amounts of time before a big concert.

"I feel a little bit of pain inside of my joints, that means I'm starting to have bleeding inside. I have to inject right away whenever I feel that because, once the bleeding happens inside, it takes more medication to actually stop it," Jin said. 

He will need the medication forever. He calls it a blessing.  

"It really makes my life much easier, and also easier to envision myself doing what I want to do here," said Jin. 

After he graduates in May, he hopes to get a job in America, both teaching and performing, but he needs a job that offers him health insurance that will pay for his injections. 

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