Woman holding pink breast cancer awareness ribbon

Giving Voice to All Breast Cancer Patients

When she was 31 years old, Maimah noticed a lump in her breast. At such a young age, she had never thought about the possibility of having breast cancer, but she knew she could not wait to seek care. She scheduled an appointment with her physician immediately. 

After her first round of doctor visits and tests, Maimah was diagnosed with a cyst, not cancer. The surgeon told her that she was too young to have breast cancer, and to come back in six months to a year or to wait until 40 years old, which was the prescribed age to start screening, but Maimah felt in her body that something was wrong—something beyond a cyst—so she pushed to have a biopsy done. 

More than six months after she first felt the lump, Maimah’s biopsy results showed she had breast cancer. It turned out that Maimah had Triple Negative Breast Cancer–a very aggressive type of breast cancer. If she had not pushed for screening, she may not be alive today. It was then that Maimah understood the importance of advocating for one’s own health.

“I know my body enough to know when something is wrong, and I knew that I had to push back on the doctor’s initial diagnosis,” Maimah explained. “More patients need to learn the importance of speaking up, and we need to advocate for the care we deserve."

Maimah felt called to help others battling breast cancer advocate on their own behalf, and to educate themselves about breast cancer diagnosis and treatment options. While undergoing her own treatment, Maimah founded the Tigerlily Foundation in 2006 with the mission of educating, advocating for, and empowering young women throughout their breast cancer journey. 

Maimah, breast cancer patient and advocate
People tell me, you can’t save the world and I say yes, I can. I do it every day, one person at a time.

Maimah Karmo, author and founder of the Tigerlily Foundation for breast cancer patient advocacy 

“When I was diagnosed, I had the right set of circumstances: a healthy relationship with my care provider, a supportive family, and a history of speaking with my mother openly about these issues,” Maimah said. “But not everyone is in that situation when they get their diagnosis. How many mothers and daughters are having these conversations? How many people know what questions to ask? That is the problem I want to help solve.”

The Tigerlily Foundation started with Maimah sharing her personal story with other patients. Since then, it has grown to include fundraising, resources for patients and caregivers, advocate training, and policy work. Tigerlily has a strong focus on supporting the metastatic breast cancer community and ending treatment disparities—of age, stage, and color—in our lifetime. 

“I laid out my vision to the foundation board, and of the eight members, six told me our goals were crazy or impossible. But with people dying of cancer every day and others are waiting for someone else to fix the problem, I had to ask myself, if I don’t do this, who will?” Maimah said. “If I had waited for everyone to accept my mission, or waited for the right amount of money, we wouldn’t be where we are today.” 

October is recognized as Breast Cancer Awareness Month around the world, where the community comes together to raise awareness about the disease and advocate for better care and treatment options for patients. Despite the success of this highly visible, global event, Maimah sees important gaps in breast cancer advocacy and education.

“As much work as we are doing, I find we are oftentimes speaking to ourselves—talking about what is happening in the breast cancer space to people already part of the community. But for many people, they aren’t thinking about breast cancer until it touches them personally,” Maimah said. “My goals are to focus more on educating young girls who haven’t yet been touched by breast cancer, educate parents and partners, and change the general consciousness around investment in health and health advocacy.”

Maimah and the Tigerlily Foundation also aim to improve the inclusion of women of color in initiatives that could have an impact on their health, and to address health inequities. In the United States, the death rate for breast cancer is 40% higher among black women than white women, and a higher percentage of breast cancer diagnoses are made at an earlier stage among white women than black women.1 Tigerlily's Diversity and Inclusion Pledge for Black Women, launched in 2020, takes aim at the disparities in outcomes for women of color fighting breast cancer.

“When we started talking to black women about their experiences, we found a number of disparities in detection and outcomes,” Maimah said. “We need to ensure our biases—meaning our personal perceptions—do not cloud our lens. We need to keep a clear view of the full picture and include people of color in our work from the beginning, co-creating solutions so we can have a real impact.”

As she takes a step back and assesses how far we’ve come and where we are headed, Maimah is hopeful for the future. “I am already seeing more of a collaboration between the system and patients, and more respect for people and patients,” she said. “We can’t underestimate the power of each individual to create change, in their community and in the world.  My life is my living legacy.

Sources

  1. Richardson LC, Henley J, Miller J, Massetti G, Thomas CC. Patterns and trends in black-white differences in breast cancer incidence and mortality—United States, 1999–2013. MMWR 2016;65(40):1093–1098. 

 

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