Everviolet Chats: Allyn Rose, Women's Healthcare Advocate, Founder of The Previvor Foundation & Former Beauty Queen
We are privileged to introduce Allyn Rose, a remarkable women’s healthcare advocate, founder of The Previvor Foundation and former beauty queen. Allyn's journey is both inspiring and transformative – rooted in her personal experience with breast cancer prevention, shaped by profound loss and elevated by her bold decision to undergo a prophylactic double mastectomy. As Allyn poignantly shares, "No 16-year-old girl should have to live the rest of her life without her mother like I did." This deeply personal commitment fuels her work with The Previvor Foundation, where she passionately advocates for women’s health and prevention. Read on to discover more about Allyn's inspiring journey, her impactful advocacy and the powerful work she continues to lead.
Your journey with breast cancer prevention started at such a young age. Can you share how the loss of your mother, grandmother and great aunt shaped your mission to educate and empower women?
My mother was diagnosed with breast cancer for the first time at age 27. She had a recurrence 20 years later in the other breast. She passed away just before her 50th birthday. My entire childhood, cancer was always part of the conversation. But I proudly boasted about my mother as a “survivor.” Her recurrence didn’t feel real. I was only 12 when she was diagnosed, and it was hard to process. I understood what it meant, but the reality that I might lose my mother didn’t fully sink in. My mother passed away a month prior to my 16th birthday. I promised her that I would make use of every day that she didn’t have. So, I’ve dedicated my life to educating women about how to prevent cancer. No 16-year-old girl should have to live the rest of her life without her mother, like I did.
At 24, you made headlines with your courageous decision to undergo a prophylactic double mastectomy. What were some of the most challenging aspects of making this decision, especially under the public eye, and how did you navigate those challenges?
Facing the reality of what a mastectomy meant for a woman in her 20s was a challenge. I wasn’t married, I didn’t have children, and I was working full-time as a model. So much of my identity (and my entire career) was wrapped up in the way that I looked. If that changed, I didn’t know how I would navigate it. To add to it, I had publicly shared my decision and received viral media attention around the globe. I was constantly bombarded with feedback (a lot of it was negative) about my choice. I was attacked by the Westboro Baptist Church, had crazy people writing letters to my father and received messages from all over the world saying I was “mutilating myself.”
The Previvor was born out of your desire to provide comprehensive information to women facing similar decisions. How has the platform evolved since its inception, and what impact do you hope it continues to have on women’s health and advocacy?
The platform has evolved every day – I look at it like a living, breathing organ, constantly growing with my personal lived experiences, as well as the experiences of the women who use it. Being a previvor is still a relatively novel concept – our generation is navigating these healthcare choices for the first time. I hope that the platform serves as an advocacy tool for women to feel empowered about their choices, to know that they have options and to feel comfortable pushing back against providers who don’t have their patients' best interests at heart.
With the increasing identification of genetic mutations, what new issues do you see arising for women, particularly younger women, as they consider their healthcare options and the potential for preventive measures?
The biggest issue I see is the influx of young women finding out they have a cancer mutation by accident. With the increase of home tests and genealogy tests like 23andMe, a new generation of young people is grappling with information they didn’t ask for. They don’t know what to do or where to start. The Previvor is here to change that.
I also worry about the impact of gene tests on health insurance premiums and the ability to access life insurance. We need to keep our eyes open and advocate on behalf of patients to maintain access to these resources.
You were the first woman with a mastectomy to be featured by Sports Illustrated Swimsuit. How did this milestone affect your personal advocacy, and what message did you hope to convey through that platform?
I never could have imagined that in my 30s, post-mastectomy, I would be featured by an iconic American “beauty” brand like Sports Illustrated Swim. I thought that having my mastectomy meant the end of those types of dreams. But getting to be the catalyst for a new generation of women to feel like their dreams don’t stop post-surgery or at age 29 was incredibly humbling. Representation matters, and I get to be the role model that I needed for myself.
Can you speak to the emotional and psychological journey of undergoing a mastectomy, and how women can find strength and support during such a vulnerable time?
Undergoing a mastectomy is an incredibly emotional experience. As a woman, your breasts are so intrinsically tied to your femininity – from being part of your female form to your sexuality to how you can feed your children. Deciding to prophylactically remove them without a cancer diagnosis was really challenging and required a lot of long-term perspective. I encourage women to always lean on their support system – to allow themselves to ask for help.
Your decision to go public with your mastectomy brought international attention. How did that visibility affect your personal life and your advocacy work?
It gave me the platform to truly speak to my generation. I am so grateful to have this platform to advocate for something that is so important to me.
What advice would you give to women who are currently grappling with the decision to undergo a prophylactic mastectomy or other preventive measures?
Know your options. Women who know their options and are active participants in their healthcare choices are statistically happier with their outcomes. Compile a team that has your best interests at heart – if you get push back from your team about what you think is best for you, it might be time to get a new one.
How do you see the role of community and peer support in the journey of those affected by breast cancer, and how does The Previvor foster these connections?
More and more people are reaching out to “real” people via social media who have similar lived experiences for community and support beyond their own family and friends. Having a community is invaluable in being able to connect and feel support through cancer surgeries and the realities of it all. The Previvor brings women together from all walks of life to support one another.
In your experience, what are some common misconceptions about prophylactic mastectomies that you would like to dispel?
The biggest misconception is that you won’t look good after surgery. Surgeries are so advanced these days, and especially if you are a prophylactic patient, you can look incredible post-op. So much emphasis is placed on “being grateful that you don’t have cancer” – but it’s okay to also care about your surgical outcomes.
What role do you think the healthcare system should play in supporting women who are identified as high-risk for breast cancer, especially as genetic testing becomes more common?
Providing insurance coverage for preventative healthcare measures is the most important thing that the healthcare system can do. Allowing a woman to make confident, informed, preventative choices can be the difference between suffering the same fate as generations who went before you or living a long and beautiful life with your family.
What does Everviolet’s mantra “Beauty of Change” mean to you?
It means that even if you experience change in your life, that doesn’t mean you are somehow less you than before. You’ve simply evolved into a new version, and that’s beautiful.
Looking ahead, what are your goals for The Previvor, and what message would you like to leave with women who are at the beginning of their breast cancer prevention journey?
My goals for The Previvor are to continue to provide a space that allows women to take a deep breath knowing that they have answers and options. We hope to take away the fear of the unknown and empower a new generation of women to take charge of their health.
