Family Profile: The Bjorklunds

Erika Bjorklund is in the midst of what anybody would call a busy summer. She’s just finished her second year of medical training to become an osteopath, which means that after weeks of intense studying she’ll have a marathon test in June that covers everything she’s learned in the past two years. As soon as that’s over, she’ll fly from her home state of Washington to the Huntington’s Disease Society of America convention in Kentucky. But when she heard that an HD research study needed control volunteers to provide a sample of spinal fluid—and the procedure had to be done at a hospital in Iowa—she didn’t flinch. On her way back from Kentucky to Washington, she’s stopping off in Iowa to get a spinal tap.

It’s not just her: The whole Bjorklund family goes the extra mile for HD research. Erika’s older sister Melissa, who has the expanded HD gene, is now volunteering for her second study, a drug trial to test a treatment for HD. The studies are in Seattle, a drive of about an hour and half from her home in western Washington state, so their mother Cindy takes time off work every week or two to drive Melissa there and back. Despite the inconvenience, they’re both enthusiastic about the study. “I feel optimistic that it’s going to help me,” Melissa says. “It’s also helping other people, testing other things for them—for the future. I do it for both reasons.”

For Erika, who is gene-negative, there are no immediate payoffs involved in flying to Iowa to get a lumbar puncture—only hassles and risks. But she’s determined to do whatever she can to help HD research. “If I’m going to be a clinician, and expect my patients to be in trials, I need to be willing to do it myself,” she says. It won’t be the first time the family has gone out of their way to be involved in studies; a few years back the family vacation to California included a detour to the Gladstone Institute outside San Francisco, where Melissa donated blood for genetic research. And a family trip to Texas had to be rescheduled last winter so that she could be sure not to miss her first appointment for a new drug study.

The Power of Optimism

Erika and Melissa’s father, who had HD, died when the sisters were young. They both decided to get tested and found out on the same day almost 10 years ago that Melissa had the HD gene and Erika did not. At the time, Erika was just about to begin culinary school. After she finished she decided instead to pursue a career in medicine and research in order to help people with HD. “I want to be a clinical neurologist doing research studies,” she says. “Unless people are doing research, learning about outcomes, we can’t really figure out what is the best way to treat people. There are so many questions with HD that still need to be answered.”

“Believing you can make a difference by being involved in these trials can be helpful.” —Cindy Bjorklund

Melissa began volunteering for trials of new drugs in 2012, when she signed up for the Reach2HD study of the new compound PBT2. As in many drug trials, some people were given the active drug and others given a placebo, an inactive compound, but they weren’t told which they were getting. Melissa and her whole family were sure she was taking the drug because they all could see that she was improving. During the six months that the trial went on her speech was becoming clearer and she was functioning better.

After the study was over it turned out Melissa had been taking the placebo – a good example of how powerful the placebo effect can be, and the reason why any new drugs have to be tested against inert pills, to make sure that the active ingredients in the drug is what is actually improving symptoms.

Melissa thinks the reason she was doing better was probably because she thought she was taking the drug, and she expected it to work. Her mother thinks it was partly the sense of being involved in a constructive effort to improve treatment of HD. “To me, this is a real lesson in the power of the mind, and the human spirit to believe in something,” says Cindy. “It brought home the message that having hope and believing you can make a difference by being involved in these trials can be helpful. It was fascinating.”

As the primary caregiver, it falls to Cindy to do all the paperwork, request family medical leave from her job, and regularly drive to the study site. “There are definitely hardships,” she says. “But I don’t regret any of it.” Cindy and Melissa make the best of the trip by making a day of it: Going shopping in the city after the study visit, or going out for lunch. “They try to make it fun,” says Erika. The site staff at Evergreen Health also makes it a pleasure, Cindy and Melissa both say. “It can be a commitment, but it’s worth it in the end, for most people,” says Melissa. “I’d recommend it. It’s really hopeful for the future. It helps everybody.”

All three Bjorklunds feel optimistic that studies are finally now getting off the ground to test treatments for HD. One reason that all three are open about their family’s HD history is due to this sense of hope about the future. “It’s made me very proud of both of my daughters for being involved in the HD community, for being involved in research trials on Melissa’s part, and learning about how to help people with neurological diseases on Erika’s part,” says Cindy. “In that way, we have a really positive family story.”

This story was originally published in the June 2014 issue of Enroll!