Maimah Karmo shares her story with triple-negative breast cancer and how she founded the Tiger Lily Foundation. Maimah emphasizes the importance of self-advocacy, community support, and education in traversing healthcare challenges. She shares her experience of being dismissed by doctors due to her age and ethnicity, and how this motivated her to create an organization that empowers women of color facing similar struggles.
Key Highlights:
- Trust your gut, it could save your life.
- Don’t do it alone, community is what will help you do what you need to do even if you’re afraid.
- Be the best advocate you can be for yourself, this is your life and your body – you are worth the fight.
About our guest:
Maimah Karmo is the Founder/CEO of the Tigerlily Foundation (Tigerlily) and an eighteen-year survivor of breast cancer. On February 28, 2006, at 4:45 p.m., Maimah was diagnosed with Stage 2 triple negative breast cancer. She had no family history and was 32-years old. While undergoing her second round of chemotherapy, she made a promise to God that if she survived, she would create an organization to educate, empower, advocate for and support young women affected by breast cancer. A first-generation immigrant from Liberia, who has experienced disparities first-hand, she is a leader in the women’s health field, creating and implementing national health initiatives for women and girls, with a goal of eliminating disparities of age, stage and color. Under Maimah’ s leadership, Tigerlily Foundation has launched national and global health initiatives focused on ending disparities, through the #InclusionPledge, partnering with global stakeholders, with a call to action to recognize health disparities as a social justice issue; and working to end disparities for black women in our lifetime. She is a global thought leader, health advocate and philanthropist, committed to justice and equity for all. Maimah also works directly with women and their families to connect the patient with better care and knowledge. through events such as the Annual Young Women’s Breast Health Day on the Hill and other philanthropic efforts and successful educational and support programs.
You can find Maimah on Twitter, on Instagram, and on Facebook.
Check out the Tigerlily Foundation here.
Key Moments:
At 6 minutes 25 seconds “I ended up finding the flower one day, the tiger lily… It's like a woman, beautiful, different layers to her, and also when people are going through treatment there's a sense of so much fear. You do lose things in a way. You may lose your petals: your hair, eyebrows, eyelashes, breasts, other parts of your body, male or female. The flower is a perennial, so in the fall, winter, the petals fall off but in the spring and summer, they blossom again. I want people who are coming to Tigerlily to feel that sense of: I'm going through this time of dormancy and things are falling off, but that means I could grow and transform into something beautiful and amazing and just badass.You could find beauty, strength and be transformed throughout the cancer journey.”
At 11 minutes 7 seconds “So I did my breast exams every month as a habit. I shower, wash everything, check them, and then one day it wasn't the same.. And with the difference in knowing it was, it was a very, very subtle change when it was there, but I've been doing my exams for 18 years. I wanted other girls and their moms to have those kinds of conversations to talk about, as you're getting on the world, know how to carry yourself, how to feel confident in yourself, how to speak your mind, how to love your own company, how to love your body, how to honor that by eating healthy, getting rest, knowing your body inside and out and taking care of it and all the things.”
At 14 minutes 44 seconds “For anyone watching this, your intuition can save your life, so trust it. There are all the guidelines, the USPSTF guidelines, ACS guidelines, and NCCN guidelines. All those guidelines said that people like me who are younger and black shouldn't have cancer when in fact we get breast cancer the most often and have the highest mortality rates still. It's still increasing at this time 20 years later, so if I had followed the guidelines, they would have killed me. And who makes the guidelines? People who are very smart, who have big titles and accreditation at these big hospitals, but they were all wrong. Then those guidelines informed doctors who believed them because they say that you don't fit that profile. The guidelines were wrong.”
Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
YouTube Chapters:
0:00-06:21 Maimah’s cancer story
06:22-17:28 What the Tigerlily Foundation is and how it came to be
17:29-23:30 How to get smart during treatment
23:31-28:14 The San Antonio Breast Cancer Symposium, the largest in the world!
28:15-31:40 Looking back on the last 20 years: the progress and the hopes for the future of oncology
31:41-32:45 Goodbyes and episode disclaimer
YouTube Tags:
Manta Cares, cancer, cancer sucks, oncology, breast cancer, TMBC, triple negative breast cancer, clinical trials, cancer research, patient advocacy, personalized care, quality of care, ACS guidelines, NCCN guidelines, cancer guidelines, standard of care, patient from hell
Links:
Episode page:
YouTube: https://youtu.be/05cMwsXah1s
Apple podcast:
Spotify: