Interview with Maimah Karmo (Part 1)

Maimah Karmo was diagnosed with breast cancer when she was only thirty-two years old. While going through chemotherapy, she had the idea to start the Tigerlily Foundation, a nonprofit organization dedicated to helping young women with breast cancer. Maimah has infused Tigerlily with her passion and enthusiasm, and the result is that – just a few short years after its conception – the Tigerlily Foundation has grown by leaps and bounds. Here is the first of a two-part interview with Maimah:

Tell me a bit about your breast cancer journey. You were very young when you were diagnosed – only thirty-two years old. Did you find the lump yourself?

Yes, I found the lump in the shower while doing a breast self-examination. My mother had taught me to do my exams at thirteen, and it formed a habit that ended up saving my life. I became so accustomed to doing the exams that it was second nature. I went to see my OBGYN, got a mammogram and then went to a breast surgeon, who told me that I was too young to have breast cancer, even though the lump wasn’t aspirating. She told me to come back in six months. Over that time the lump doubled in size. I pushed for a biopsy and was diagnosed the next day. It turned out that the lump was aggressive. If I had waited, I may have been metastatic or dead by now. Good thing I was doing the exams, knew my body and was my own best advocate.

I love the name of Tigerlily Foundation. Is there a story behind the name?

When a woman loses her hair, one or both of her breasts and possibly her ability to procreate (due to chemo), she loses the things that many women use to define themselves as women. She feels as if she has lost her petals. Likewise, a lily, in the fall and winter becomes dormant and its petals fall off, but in the spring and summer it transforms into a magnificent bloom. The stargazer lily is our emblem. It is beautiful, proud, fragrant and can never be forgotten. The fragrance is intoxicating.

Women go through a “shedding,” a dormancy and time of change while undergoing treatment. But they can be transformed through their experience, like a flower and realize that their beauty and strength is not about their hair, breasts or other external things. Tigerlily helps to remind them of that… that they are beautiful, strong and can be transformed though this experience.

There are many organizations devoted to breast cancer advocacy. Tell me a bit about Tigerlily’s focus – what makes it unique? What inspired you to start the foundation?

Tigerlily is focused solely on younger women – under forty – because they are often overlooked and underrepresented when it comes to breast cancer. Most women think that breast cancer happens to women who are forty and older and that is not always true. Younger women tend to have more aggressive breast cancers and higher mortality rates – often because they are misdiagnosed.

In addition, younger women have specific needs to their demographic that women who are older might not grapple with – lifestyle issues – dating, insurance coverage, financial issues, fertility, coping with a longer lifespan while living with cancer or being metastatic, life after cancer, during college, dating, caring for younger children, not having a strong support system, being single, being in the prime of their lives and then having to face their mortality. Even the issue of them thinking they are too young and not being aware of their risks – someone needs to stand up and create a voice and a change for these younger women – that is what Tigerlily is doing.

Furthermore, while other organizations are supporting and raising funds for breast cancer research, which is critical, we are there in the trenches, supporting these young women “between the phone call and the race.” We are there from that initial phone call -supporting them with financial assistance, meals, buddies, empowerment and understanding – until they are whole again. Until they are on the other side.

Coming up next: Maimah offers inspiration! She is really living out her dreams, and her enthusiasm is contagious. Check back on Thursday to find out more about Maimah and the Tigerlily Foundation – and to read Maimah’s definition of a “ferociously fearless female.”