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Cancer survivor creates a platform to empower patients

By September 16, 2018 No Comments

Jenny Ahlstrom in her office in Lehi. On the computer screen is the HealthTree website, where cancer patients share their data in a hope to help researchers find a cure while identifying what is the best treatment option for them. (Ty Mullen)

 

See also Patient data helps researchers fight cancer.

Jenny Ahlstrom, a wife and mom of 6, was diagnosed with cancer in 2010. Ahlstrom is a myeloma survivor who transformed one of her biggest adversities into a blessing for others.

Multiple myeloma is a cancer of plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system. Cancer starts when the cells begin to grow out of control, which means that cells in nearly any part of the body can become cancer. Multiple myeloma is when the plasma cells become cancerous and grow out of control. Researchers are still looking for a cure, but some treatments are available and include medications, chemotherapy, corticosteroids, radiation, or a stem-cell transplant.

“One of my favorite days is when a myeloma patient who just got diagnosed calls me and asks me for help because I know that is my mission in life,” Ahlstrom said.

After being diagnosed with myeloma, Ahlstrom researched treatment plans and found significant gaps in what she found online. The information on different treatment options was very technical and had a vocabulary which was difficult to understand if one was not familiar with medical and scientific terms.

Ahlstrom realized many other people who are diagnosed with myeloma do not have the time nor the materials necessary to do the extensive research like she was doing. She wanted to change this somehow so that patients could be more involved in their own treatments.

Ahlstrom was only 43 when she was diagnosed. She was living abroad and taking care of her children, whose ages ranged from 2 to 15-years-old. “My mom job is my favorite job,” Ahlstrom said. In 2012, after she had finished the major part of her treatment, Ahlstrom designed a platform with her husband’s help.

The website she designed provides accurate and easy to understand information to help patients diagnosed with myeloma understand what is the best treatment option for them. This platform also compiles information to help researchers in their search for a cure. Ahlstrom believes that patients can help accelerate a cure by weighing in and participating in clinical trials. “We treated my disease as a startup.” Ahlstrom said, “This is a platform to a cure.”

This non-profit organization, CrowdCare Foundation, was put in place to help those diagnosed with myeloma and everyone who might be involved with it in one way or another, be them patients, doctors, or researchers. The platform facilitated the creation of an online community, where patients can share symptoms, treatment options, and even demographic information. Doctors and researchers can also use this platform to identify trends and hopefully a cure.

“A lot of people ask me how I cope with this devastating disease, the best therapy for me is building this platform and working toward finding a cure,” Ahlstrom said.

Ahlstrom felt a responsibility and desire to help people so they don’t have to live through the frustration she did. Annie Condon, the account executive for CrowdCare, said “What made me most excited about working with Jenny is the fact that she was so kind, altruistic, and well-meaning,” Condon continued, “She is very humble. Her mission isn’t to glorify herself, or anything like that, her goal is to find a cure for myeloma.”

Ahlstrom is currently traveling around the country, looking for people who might benefit from the platform. She also hopes that gathering data from more patients will help advance a cure for this cancer.

“The end goal is to get anybody who has myeloma to be able to get expert level help at the get-go,” Ahlstrom said.

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