Maimah Karmo was diagnosed with breast cancer at the age of 31. Karmo had been doing self-tests since she was 13, as her mother had taught her, and she could rapidly detect changes in her breast, which felt like a pebble at the time.
Despite her certainty that it was an indication of breast cancer, her doctors disputed her claims, especially after the mammography she had requested came back negative. To calm her, the doctors told her that she was too young to be concerned and that she had no family history of the disorder.
She chose to perform a biopsy because she was determined to challenge their diagnosis. “I had to push for a biopsy for months and months and months and months and months. And then finally I got it. The doctor, the day I got it, she was kind of dismissing me like, ‘Why are you doing this? This is a waste of my time. There are other people who are really sick. You have nothing wrong with you,’ when she was doing it. So I felt really uncomfortable,” she said, according to Essence.
She was diagnosed with triple-negative breast cancer when the results came in. She was apologized for missing the lump and told it was because of her “dense breasts.”
“It’s aggressive,” Karmo said of triple-negative breast cancer. “It recurs at a much higher rate [for black women] than other populations. It is very deadly, and until about three years ago, there was no treatment targeting triple-negative breast cancer in any setting. And so pretty much they told me that I would probably recur in five years, at which time it would be metastatic and I would die. And that was what I was looking at,” she shared.
After undergoing surgery to remove the lump, she attempted chemotherapy for several months. She was on the verge of giving up since the process was so onerous. Her disease had an emotional and financial impact on her as well as a physical one. She was doing it all while caring for her 3-year-old daughter.
Karmo, who was dealing with weight loss, infertility, and other concerns, began to wonder how other women in her situation kept their heads up. This is how her Tigerlily Foundation came to be.
“My work began out of a sense of this is a very dire need. People are dying. This is sick care, not healthcare. And if I have the opportunity to make a difference in my five years I have left, whether it’s less than that or not, I’ll do whatever’s in my power to make a difference and to ensure that people have the right to live,” Karmo recounted.
It’s been 17 years since her illness, and she disclosed that she not only follows a raw vegan diet but also drinks alkaline water on a daily basis to keep healthy. In addition to these activities, she indulges in “colonics and sauna visits to purge toxins, tries meditation, reiki and acupuncture, gets plenty of rest, fasts (juice fasting for a week or two, occasionally, just water for a week), and avoids stress with the help of yoga.”
Her Tigerlily Foundation campaigns, educates, empowers, and participates in programs that help both breast cancer survivors and non-survivors. Karmo advocates for Black women, particularly those with breast cancer, to participate in clinical trials, citing data that reveal Black people make up less than 5% of clinical trial participants while having some of the worst death rates across a range of diseases, including breast cancer.
For this reason, Tigerlily Foundation’s “My Living Legacy Campaign” partnered with global pharma company GSK. “It’s not about this weird thing where they stick you with medication in a room that locks and you can’t escape. You go to the doctor and they say, ‘Here’s an experimental drug that can help you live longer,’” she revealed.
“And oftentimes most of the drugs help people live between 18 months to three years longer, and some will actually stop cancer in it’s tracks for a long time, up to 10, 15 years,” she said, adding that she has had friends who have lived 15 years past a diagnosis of Stage 4 cancer because they were on a clinical trial.
Karmo’s daughter, Noelle, now 20, helps her with the organization by conducting the Foundation’s Hope Box Program, which helps those who have recently been diagnosed.
Karmo encouraged women to see their doctors on a regular basis and to schedule mammograms every year. “Put it on your calendar. It’s all of these things that matter,” she said.
According to the American Cancer Society, triple-negative breast cancer (TNBC) accounts for roughly 10-15% of all breast cancers. TNBC varies from other kinds of invasive breast cancer “in that it tends to grow and spread faster, has fewer treatment options, and tends to have a worse prognosis (outlook).”