Manage episode 508391387 series 3599540
In this powerful episode of Voices of Inclusive Research, Dr. Renarda Jones sits down with survivor and advocate Chenyka “Nyka” Ramos to talk about her journey with Hodgkin’s Lymphoma, cold capping, and what it means to navigate treatment as a woman of color.
Together, she and Dr. Ren unpack the larger issue of representation in research and treatment protocols—from the absence of women of color in cold capping studies, to the small yet meaningful resources and advocacy networks that can make this option more accessible.
Penguin Cold Caps – Learn how cold capping can help reduce hair loss during treatment: penguincoldcaps.com.
HairToStay – This nonprofit makes scalp cooling more accessible by providing subsidies for patients in need: hairtostay.org.
Watch the video that inspired Nyka to try cold capping herself: https://youtu.be/eSv9JKGl4oQ
🎧 Tune in for an honest, deeply personal, and practical conversation that blends survival, science, and the urgent need for equity in cancer care.
Must-Hear Insights and Key Moments
- Hair Is More Than Cosmetic – For many women, especially women of color, preserving hair during treatment is about dignity, identity, and strength.
- Representation Gaps in Research – Most cold capping studies and recommendations don’t account for textured hair, leaving women of color without guidance.
- Barriers Beyond Cost – Awareness, cultural stigma, and provider education shape who even gets offered the chance to try cold capping.
- Community and Advocacy Matter – Nonprofits, resource lists, and persistence can help patients access funding and support.
- Success Is Personal – Keeping 50% of her hair was a victory that made the journey feel more survivable.
Words of Wisdom: Standout Quotes from This Episode
- “Don’t be afraid to ask questions. Don’t be afraid to say, Hey, can I get support with this? Or, Hey, are there any subsidies or is there any money out there for this? Because there is.” – Chenyka Ramos
- “Just because one door closes… doesn’t mean you stop trying. ’Cause I got plenty of no’s.” – Chenyka Ramos
- “Anything that’s gonna help me feel more like myself, I’m gonna take it.” – Chenyka Ramos
- “You gave yourself a chance and it worked.” – Dr. Renarda Jones
- “That’s what research is like, finding the answers that are gonna work for us.” – Dr. Renarda Jones
About Chenyka
Nyka is a San Diego native who completed both her bachelor’s and master’s degree at Alliant International University.
She is a recent survivor of Hodgkin's Lymphoma and has made a commitment to providing advocacy and education on the disease. She is excited to share her experience with cold capping and will continue to advocate for the use of hair preservation treatments.
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Chapters
1. Introduction (00:00:00)
2. Nyka's Journey to Diagnosis (00:00:52)
3. Understanding Hodgkin's Lymphoma (00:02:20)
4. The Cold Capping Experience (00:07:18)
5. Research and Support for Cold Capping (00:10:48)
6. Practical Tips and Resources (00:14:17)
7. Taking Control: Learning to Cap at Home (00:27:19)
8. Managing the Cold Cap Process (00:28:09)
9. Challenges and Rewards of Cold Capping (00:29:33)
10. Hair Loss and Recovery Journey (00:31:09)
11. Advocating for Cold Capping in the Community (00:36:53)
12. Empowerment and Support Systems (00:42:24)
29 episodes