What’s the Best Way to Learn About Your Bleeding Disorder?

by: Laurie Kelley

Our world is biased toward visual information and learning, because humans are mainly visual beings. From advertising to teaching tools, we are all about sight, color, and shape. Studies have shown that 65% of people learn best visually.1

But not everyone learns visually. It’s now recognized that people have individual differences when it comes to learning, and even visual learners learn in different ways. For example, one person learns by visiting art museums, but another likes watching TV documentaries; both are visual methods.

Research in the field of learning modes, or styles, led to the widely cited Theory of Multiple Intelligences, developed in 1983 by Harvard University’s Howard Gardner. Gardner found nine distinct types of “intelligences,” which are now used to describe how people learn.

What’s your preferred learning mode? And how can you harness it to learn about managing your bleeding disorder?

Nine Learning Modes

You may possess several of the nine modes listed here, with one being dominant. Or you may use different modes in various circumstances. For example, I’m a verbal learner who likes to learn in a solitary way. But I occasionally like to learn a new piece on the piano for fun, which requires visual, aural, and physical modes. You can also change your mix by developing and enhancing your less dominant modes. If you don’t use particular learning modes, they may weaken.

  1. Visual (spatial): pictures, images, understanding of space
  2. Aural (auditory-musical): sound, music
  3. Verbal (linguistic): words, in both speech and writing
  4. Physical (kinesthetic): body, hands, sense of touch
  5. Logical (mathematical): numbers, logic, reasoning, systems
  6. Social (interpersonal): learning by being with other people
  7. Solitary (intrapersonal): learning alone, using self-study
  8. Natural: being outside; identifying plants, animals, maps
  9. Existential: questioning human existence, the meaning of life and death, the human condition

The key to learning about bleeding disorders is to recognize how you learn best, and then to find resources that use your strongest modes to help you learn faster and more effectively.

In the Beginning, There Were Books

There was a time when virtually no information on hemophilia or von Willebrand disease (VWD) was available in any learning format, except meeting with your hematologist. That’s one of the reasons I wrote Raising a Child with Hemophilia in 1990, and published all of our subsequent books: to reach the verbal-oriented people in our community, and to provide a tool for patients to use all the time, not just at in-person meetings. For me, social support group meetings weren’t so useful. More experienced parents seemed to want to scare the rest of us with their bleeding horror stories! Medical journals and published articles seemed more logical and reliable.

Fortunately, for those who are not mainly verbal learners, we now have plenty of other ways to learn. Chapters hold more local meetings, which may appeal to more social-oriented people; national meetings offer scholarships for first-time participants; CDs, DVDs, podcasts, and YouTube videos are available; and now there’s even a movie—Bombardier Blood. Just recently, Hemophilia: The Musical debuted!

Patrick “Big Dog” Torrey, founder of GutMonkey, offers the bleeding disorder community learning through physical and natural modes: rafting, hiking, zip-lining, and camping. No matter your learning style, there’s bound to be some educational resource you’ll enjoy, to help you understand your bleeding disorder.

What YOU Find Most Useful

We asked our Facebook friends what resources have helped them most. Their answers reveal preferred learning modes. Phillip Smith, for example, offered what sounded like a logical mode of learning: direct, scientific information. “I read product inserts, news releases from the company that produces the product, and company R&D pipeline info on future products.”

But any learning mode may shift when you’re stressed. It’s normal for people to want to be with others for support, which results in learning. So social learning may become dominant for a while. Given that, it’s no surprise that many Facebook friends mentioned chapter meetings, symposia, and especially meeting with hemophilia treatment center (HTC) staff to get information about bleeding disorders.

“I most value learning from the experiences of those who are living and thriving with hemophilia,” commented one mother of a child with hemophilia. Jasmine Eaglin, another mother, wrote, “First I learned about NHF, then I got involved with the New York City chapter and attended every single event I could. Eventually, I made it to an HFA conference in 2017. The organizations provide so much information!” Heather Coons, mother of a 13-year-old with hemophilia, wrote, “I learned from books, but talking to the HTC staff and families helped me the most.”

And not surprisingly, many who started with only books, back in the 1990s and 2000s, are now turning to online resources. Diana Lynn shared: “In the beginning it was Raising a Child with Hemophilia. Now that our son is older, we look to meetings and websites (mainly medical/journal articles) for our information.”

Allison Pohl summed up this change in information sources: “When our son was diagnosed in 2000, the main resource for information on hemophilia was our HTC staff, and Raising a Child with Hemophilia. There was no social media back then, and most information we received was passed face to face or by snail mail.”

With all the options available, Allison still relies mainly on her HTC. But, she noted, “In addition, we read PEN, speak to product reps, and go to our local chapter meeting. If I want info about products or trials, I usually google scientific journals. I try to stay away from anecdotal info and stories on social media. While I like the personal experiences, sometimes the advice given is not correct.”

Social Media: Not Just for the Young and Brave

Young people with bleeding disorders seem to gravitate toward social media for information. Dakota Rosenfelt cited Twitter (“HUGE,” he wrote), NHF’s website, and even the European Haemophilia Community website. One mother of a two-year-old with hemophilia wrote,

“I love online resources, and found most of social media to be an amazing resource.”

Knowing that learning styles are changing, and tapping into the way young people learn about their world, Patrick J. Lynch’s company Believe Ltd. has focused on social media and digital resources like podcasts (BloodStream Media), videos (“HTC Guided Tour”), plays (Stop the Bleeding), forums (“Powering Through”), and now musicals (Hemophilia: The Musical). These resources represent a combination of learning modes, including social, aural, physical, and visual. Indeed, multimedia is becoming the best way to reach all types of learners.

On the Fringe

But a preferred learning mode may not matter when you have limited resources. People with VWD or rarer bleeding disorders, as well as those living in developing countries, don’t always have the luxury of choice in learning modes.

Leticia Nevarez, a Facebook friend, points to our book A Guide to Living with von Willebrand Disease as the first resource she ever had about VWD. Fortunately, a national conference (NOW; see page 11) offers a weekend of presentations and socializing, as well as Facebook social media pages where patients can share VWD experiences. Helen Smith, a woman with Glanzmann’s thrombasthenia, started Glanzmann’s Research Foundation, a nonprofit organization dedicated to offering information to patients. She now wants to hold a weekend retreat to allow patients to share in person.

Patients and families in developing countries are perhaps most limited. Without books translated into their national language, and with travel to events almost impossible, they rely mainly on the internet, accessed through their phones. This includes Facebook, which offers translation.

Patients from Kenya to Pakistan, from Nigeria to the Philippines shared their thoughts on accessing information. Samad from Pakistan learns mostly from his doctors; Sarah from Kenya learns from other patients; and one doctor from Cambodia cites Twitter and Facebook as his primary source of info. WhatsApp is popular with youth everywhere, allowing them to share experiences as a private group. When learning about your bleeding disorder, think about

how you learn in general. Which modes make you happiest? Which help you learn best? Seek out bleeding disorder resources that match your preferred learning modes.

Suzanne Harpell-Smedley summed up how multimedia learning can work: “Initially, we devoured anything by NHF. Then we found LA Kelley Communications’ books. With medical complications, we researched online and have auto-email updates sent to us. We regularly attend inhibitor summits and occasionally our local hemophilia groups. Last of all, we turn to Facebook for real-world experiences.”

Whatever your preferred learning mode, the key is to find out about your disorder, and to make learning effective and fun!

  1. Richard M. Felder and Linda Silverman, “Learning and Teaching Styles in Engineering Education,” Engineering Education 78(7), 674–81 (1988). This study later became a foundation for a standardized test called the Index of Learning Styles (ILS). Available at www.wiley.com.

©LA Kelley Communications, Inc. Reprinted with permission.

 Publication: PEN 2.19

Column: YOU, Sponsored by Shire