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14th April 2016

Overcoming a once-deadly ‘royal disease,’ young hemophiliac gives back to bleeding disorders community

Dakota Rosenfelt, 20, enjoys surfing, skiing and mountain climbing. The pharmacy doctor student looks forward to a normal life in good health – despite having hemophilia, a rare blood disorder that only a century ago would have meant crippling joint disease and a life expectancy of about 13 years.

Dakota’s bright prospects are among the most spectacular medtech success stories. In hemophilia, blood fails to clot properly, preventing the healing of internal and external injuries that normally would go unnoticed. Just decades ago, massive blood transfusions were the only treatment.

Understanding hemophilia

Scientists now know that blood has 13 proteins called “clotting factors” that switch each other on in cascading steps. In hemophiliacs, one link of the chain is missing. In the mid-1960s, a scientist made a concentrate of a single clotting factor, setting off a series of innovations that would transform hemophilia into a treatable disorder. By the early 1970s, patients were being treated at home with small amounts of the specific clotting factor they lacked.

Tragically, blood infected with HIV and hepatitis C in the early 1980s killed the majority of hemophiliacs. Scientists quickly developed heat treatments to kill viruses. Ultimately, they discovered how to clone clotting factors.

By the time Dakota was born in 1995, a new preventive standard of care was emerging. Rather than being treated for injuries, patients would take regular injections to maintain the missing factor in their blood. The new generation could look forward to normal lifespans.

The dog and the diagnosis

Dakota might never have fully enjoyed his good fortune, however, had it not been for a very attentive mother and the family dog. As 13-month-old Dakota played outside one day on a swing set, the dog playfully chased him back and forth. On one pass, the dog bumped his legs.

“All night long, Dakota screamed,” recalls his mother, Kimberly. In the morning, “he kept falling down.” She had been telling Dakota’s pediatrician for months that her baby was prone to severe bruises. She suspected hemophilia, although there was no family history of the disease. From the emergency room, she phoned the pediatrician, who finally consented to order the simple diagnostic test. Sure enough, Dakota had severe hemophilia.

Dakota may be among the rare cases where the genetic hemophilia mutation appears spontaneously. He’s in some famous company: Britain’s Queen Victoria, whose descendants spread the mutation to so many noble European families, that hemophilia became known as the “royal disease.”

Helping others

Hemophilia treatment still carries a kingly price tag. To give his peers a sense of control over their treatment amid healthcare insurance upheavals, Dakota has created a free app, the HemoTool.

Patients can use the app to store information on doctors, insurance and emergency contacts. They can record treatments, order from pharmacies, share data and obtain directions to treatment centers when traveling.

On top of this, Dakota has also become an advocate for the bleeding disorders community, raising awareness of how it can save lives to be able to recognise hemophilia and its symptoms, along with helping people go through the hurdles of doctor’s appointments and getting insurance cover for treatment.

After completing his studies in 2019, Dakota hopes to become a medical science liaison at a drug company.

“I’m planning on going sky-diving next summer,” he says. “I don’t let hemophilia slow me down.”