Maimah Karmo was 31 years old when she was diagnosed with breast cancer. Karmo had been doing self-tests since she was 13 years old, as her mother had taught her, and she could quickly feel when there was a change in her breast, which felt like a pebble at the time.
Even though she was certain it was a sign of breast cancer, her doctors denied what she was saying, especially after the mammogram she ordered came back negative. To reassure her, the physicians told her she was too young to be concerned and that she also didn’t have a family history of the condition.
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.
When the results came in this time, she was diagnosed with triple-negative breast cancer. She was offered an apology for missing the lump and informed it was due to 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.
She attempted chemotherapy for several months after undergoing surgery to remove the lump. She almost gave up since the process was so difficult. Her illness affected her not only physically, but also emotionally and financially. She was juggling all of this while caring for her 3-year-old daughter.
Riddled with weight loss, infertility and other stressors, Karmo began to wonder how other women in the same predicament held their heads up. This was how her Tigerlily Foundation was born.
“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 diagnosis and to continue to stay healthy, she revealed that she is not only on a raw vegan diet but constantly consumes alkaline water. According to Essence, she also makes time for “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 advocates, educates, empowers, and participates in projects that benefit both women who do not have breast cancer and those who do. Karmo pushes for Black women to take part in clinical trials especially those with the disease, given that studies show Black people are less than five percent of clinical trial participants despite having some of the highest death rates across a variety 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.
Currently, Karmo’s daughter, Noelle, who is now 20, assists her with the organization, running the Foundation’s Hope Box Program aimed at supporting those recently diagnosed.
Karmo advised people to see their doctors regularly and try and schedule their mammography appointments every year. “Put it on your calendar. It’s all of these things that matter,” she said.
Triple-negative breast cancer (TNBC) accounts for about 10-15% of all breast cancers, according to the American Cancer Society. It says TNBC differs from other types 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).”