Educating patients and doctors about multiple myeloma (MM) has been the mission of the International Myeloma Foundations (IMF) for 21 years. Today, we can reach out globally more efficiently than ever before. And as I'll show you, today myeloma awareness is not just a nicety, it's a crucial necessity.
In order to amplify that message for the 2012 Myeloma Awareness Month in March, the IMF launched the “Tell One Person” campaign. Patients, caregivers, friends and family members pledged to tell one person (or more!) who hadn’t heard of the disease the basics about myeloma.
We got the ball rolling on our social media channels by posting a daily myeloma fact on Twitter and Facebook. Our energetic and enthusiastic followers broadcast these facts daily to their own Twitter followers and Facebook friends, turning up the volume on our Myeloma Awareness Month message. The IMF’s Facebook page-views grew by a factor of 90!
So what’s so important about raising myeloma awareness? After all, isn’t “raising awareness” the mantra of every advocacy group in the world?
Of course it is, but in the case of a relatively unknown disease like myeloma, patients pay a particularly high price for ignorance, especially when that ignorance extends to the medical community.
We only have to read the comments we receive to see what happens when myeloma awareness is absent.
“Doctors kept insisting my mom had osteoporosis, when it was myeloma,” wrote one woman.
Another caregiver wrote that her husband visited “ten different doctors to find the source of his back pain before one of them recognized the symptoms of myeloma."
But there is another reason it has become vital to tell the world about myeloma: Younger and younger people are being diagnosed. Traditionally, myeloma was thought to be a disease that only affected the elderly. When myeloma symptoms appear in younger patients, doctors who aren’t up-to-date on the latest information about myeloma are not able to recognize it for what it is.
Case in point is a young man from Ohio who wrote on our Facebook page. He was just 17 years old when he was diagnosed with myeloma. For two critical years, his complaints of back pain were dismissed by doctors as “growing pains.”
Also in March, the IMF Hotline team received a call from a nursing student from the Midwest who was diagnosed with myeloma. She is just 22 years old, well below the typical profile. Her local doctors recommended a treatment so complex that a myeloma expert has since called it "drastic." But after contacting the IMF Hotline, she was able to get advice from IMF Chairman Dr. Brian Durie to seek a second opinion at a major medical center familiar with myeloma. The newest treatments for myeloma are both more tolerable and more effective, a perfect example of why "awareness" is so important.
We may celebrate Myeloma Awareness Month in March each year, but why wait? Spreading the word – whether through social media or Support Group meetings or flyers posted in a doctor’s office – could prompt an accurate diagnosis and early treatment for those who do not yet know they have the disease. Proper diagnosis, treatment, and monitoring are key to a good outcome. And while we all strive to do our best for today’s patients, please know that the IMF continues the search for the cure.