The IMF Spreads Awareness Through Myeloma Action Month

The International Myeloma Foundation declared March to be Myeloma Action Month to help raise awareness about the disease.
BY Brielle Urciuoli
PUBLISHED March 13, 2018
Although myeloma is the second most common blood cancer worldwide, most people are unfamiliar with the disease, and worse, diagnosed late because they are unaware of what it is or what the symptoms are.

But the nonprofit organization International Myeloma Foundation (IMF) is working to change that, as they declared March to be Myeloma Action Month.

“One of the most pertinent results of Myeloma Action Month is broadening awareness of symptoms and red flags of the disease to both patients and health care providers,” Robin Tuohy, senior director of Support Groups at IMF, said in an interview with CURE.

According to the IMF, some symptoms of multiple myeloma – defined as a cancer of the bone marrow plasma cells – include persistent or worsening tiredness, recurrent unexplained infections, back pain or any bone pain that is persistent or recurrent, swelling of the extremities, or shortness of breath.

This year’s campaign allows patients, survivors, caregivers and health care professionals to participate by using the hashtag #myelomawarrior across all social media platforms. The IMF will then stream some of the posts on their website.

By spreading myeloma information online, folks at the IMF are hoping that it will prompt both patients and health care professionals to familiarize themselves with the disease. As a result, patients might be able to start the conversation with their health care providers at an earlier stage, and in turn, providers will better understand how to treat or refer their patient to treatment, potentially improving outcomes.

“Unfortunately, even though multiple myeloma is the second most common blood cancer, most people have never heard of it,” Tuohy said. “Many confuse myeloma with melanoma, which is a skin cancer. Most importantly, we want people to learn what multiple myeloma is and how prominent it is in the population.”

In addition, the IMF is distributing Myeloma Action Month packages to myeloma support groups across the country. The packages include key resources, and, by sending them out, the foundation hopes to accomplish three things: Increase overall awareness, expand understanding among local patient support groups, and provide tools and resources to share with patients, caregivers and the entire health care team.

Down the line, the IMF hopes to find a cure for myeloma, as well as strategies for preventing the disease in the first place. The organization is doing this through their Black Swan Research Initiative, which launched in 2012 and is the driving force behind more than 40 international research projects.

“These teams are working on a wide range of approaches to finding a cure—from detecting and treating myeloma at the earliest stage of disease to developing treatment regimens to eliminate resistant disease and identifying the genetic or environmental risk factors that cause the disease in the first place,” Tuohy said.

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