“It took me eight years to get up to speed on myeloma, and that’s not fair for other patients.”
Anyone who knows Jenny Ahlstrom knows that myeloma, the Myeloma Crowd by HealthTree, and the relentless work she puts in are distant priorities when it comes to her family. That may well be the most important lesson any patient or caregiver should learn after a myeloma diagnosis.
That’s obvious to her. A film crew from BBC Story Works recently produced a story on Jenny and her family make it clear and obvious to all. It’s worth taking five minutes of your day right now to find out why. Especially if you are newly diagnosed with myeloma, smoldering myeloma, or MGUS.
Along with her family and her talented doctor Doug Sborov, MD of the Huntsman Cancer Institute, they worked to find a treatment that was right for her - all because they knew what were dealing with.
It’s hard—often unimaginable—to be able to think clearly after you’re told, “you have a type of cancer called multiple myeloma.” Cancer? Multiple Myeloma? What’s that? Then comes the period of empty numbness as things start to set in.
Jenny Ahlstrom knows all about those feelings. She remembers the hollowness from the first time she ever heard the word myeloma. But then she snapped out of it. Granted, when she did, her response was pretty unique. It ended up becoming the Myeloma Crowd and the HealthTree Foundation.
She reasoned, if she was going to be cured, her mission would be to bring as many of her fellow patients along with her to find cures for every type of myeloma. "It's so important that you get care that correlates with your type of myeloma."
Her focused tenacity led to the foundation growing, thriving, and making fundamental differences for individuals around the globe. The first goal was learn about clinical trials and do all that she could to educate fellow patients about why they join clinical trials.
Along the way she has partnered with SparkCures to help myeloma patients with the tools to find the clinical trials that are right and accessible for each of them.
And you can see the expression of her commitment in Crowd Radio, the Myeloma Crowd Research Initiative, Myeloma Crowd Round Tables, Myeloma Coaches, HealthTree Cure Hub, HealthTree University, Myeloma Crowd Community Chapters, and original research conducted by the HealthTree Foundation. You can access them all through our website.
But it’s what you don’t see, the stuff behind the curtain, that would surprise and satisfy anyone who had the opportunity to look.
There’s a Patient Experience team of counselors who will work with you to access and make use of every program we offer. Contact them at +1-800-709-1113 or firstname.lastname@example.org to find out how.
There’s a team of professionals who constantly monitor how patients use HealthTree Cure Hub, update it, make sure its clinical information is updated as it happens. This makes it more useful for users of the program and researchers who create new and novel research projects that focus on how successful (or not) current practices are.
And there is so much more going on with one focus, to serve each patient. Everyone's disease is unique and different, so why shouldn't treatment be? You can learn about how that got started by watching the BBC Story Works video. Proper and simple diagnostic tests, like gene expression profiling, are key to personalized care.
As for that feeling you have after you or a loved one was diagnosed with myeloma, you will have to snap out of it…learn, get the right treatment, prepare for adversity, dare to hope—a hope based on experience and facts.
Jenny’s hope led the way to make the work easier and fairer for the myeloma community. But her family comes first.
BBC Story Works is an ongoing project that “explore[s] stories of resilience, vision and potential [and] how medical technology connects the dots, from diagnosis to cure” in various diseases.
about the author
Greg Brozeit has been engaged in myeloma patient advocacy since 1998. He began working with the Myeloma Crowd in 2015. Prior to that, he consulted with Dr. Bart Barlogie at the University of Arkansas after working with the International Myeloma Foundation for 15 years, where he inaugurated the public policy advocacy program, patient support group outreach and IMF Europe, organizing more than 100 physician and patient education programs. He earned his BA in political science from Loyola University in New Orleans and lives in northeast Ohio.