The Children's Tumor Foundation
10/29/2026 | Press release | Distributed by Public on 10/29/2026 14:20
Erin’s NF Story: The More We Looked, the More We Found
Erin's NF Story: The More We Looked, the More We Found
October 29, 2026Featured, Featured EU, NF1, Story of NF
No Comments
For years, Erin lived with migraines and chronic pain without knowing what was causing them. At 35, imaging revealed tumors throughout her cervical spine, and genetic testing confirmed NF1. What followed was a difficult process of understanding a condition that had likely been affecting her since childhood.
Most of Erin's tumors are internal, and much of what she experiences isn't visible to others. Her story reflects the challenges of receiving an NF diagnosis in adulthood, living with uncertainty, and finding a place in the NF community-and in the research working to improve care.
A Diagnosis at 35
A woman standing in front of a blue step-and-repeat backdrop featuring the Children's Tumor Foundation logo.I was diagnosed with NF1 as an adult, at 35 after spending years living with symptoms without knowing there was one explanation connecting them.
I had migraines going back to childhood and dealt with chronic pain for years that became more persistent and difficult to manage as I got older.
Eventually, imaging for my migraines and neck pain showed tumors throughout my cervical spine. That started a much bigger investigation, and genetic testing ultimately confirmed NF1.
Then, the more we looked, the more we found.
One of the moments that has stayed with me most was reading the words "too numerous tumors to count" in an MRI report describing the tumors in my body. It is hard to explain how shocking and unsettling it is to read something like that about yourself. There is something almost unimaginable about realizing that there are so many tumors deep inside your body that they cannot even be individually counted, especially when you had spent most of your life not knowing they were there at all.
Looking back, there were signs that had been there my entire life, including café-au-lait spots that I had always just thought of as birthmarks. But no one had ever put the pieces together.
The early days after diagnosis were incredibly difficult. There was relief in finally having an explanation, but that relief was quickly mixed with grief, fear, and an overwhelming amount of new information.
Living with What Others Can't See
NF affects my life every day, even when other people can't see it.
Most of my tumors are internal, so there is often a disconnect between how I may look and what my body is dealing with. I live with chronic pain, chronic migraines, nerve pain, fatigue, weakness, vision issues, and other neurologic symptoms. There are appointments, MRIs, procedures, specialists, and the constant mental load of wondering whether a new symptom is "just NF" or something that needs to be investigated.
One of the hardest parts is the uncertainty. NF doesn't give you a roadmap. You can make plans, but there is always an awareness that your health may change them. There are fears that are difficult to completely put away: the possibility of a tumor becoming cancerous, the fear of what NF could do to my body or appearance over time and probably the hardest one to admit, the fear that something could happen that keeps me from getting to watch my children grow up.
Those aren't thoughts I live in every day, but they are part of living with a condition where you know things can change. Learning how to hold that uncertainty without letting it take over my life has been one of the hardest parts of NF.
At the same time, my diagnosis has made me very intentional about my future. I want to be present for my husband and our two daughters. I want to watch my girls grow up, and I want them to see that it is possible to live with something difficult without allowing it to become the entirety of who you are.
Finding Community and a Role in Research
The second defining moment came later, when I found the NF community.
Connecting with other people living with NF changed everything for me. There is something incredibly powerful about being around people who understand the uncertainty, the scans, the symptoms, the fear, and even the strange little parts of living with NF that are hard to explain to anyone else.
A woman stands in front of a lake and mountains holding a State of Colorado proclamation document.That community eventually led me toward advocacy and patient engagement, and that has become one of the most meaningful parts of my journey. Being in rooms with researchers, clinicians, advocates, and other patients has shown me that lived experience has real value. People with NF bring a kind of expertise that can't come from a textbook or an MRI.
I would never have chosen NF, and I would still choose a life without it if I could. But finding this community and being able to use my experience to help improve research, awareness, funding, and support for others has given purpose to something that once felt only frightening and unfair.
I am currently a member of CTF Engage and have participated in patient-engagement opportunities through the Children's Tumor Foundation. I've also attended the NF Summit and have become increasingly involved in advocacy, research, and opportunities to bring the adult patient perspective into the NF community.
My advocacy has also expanded beyond CTF. I have become involved with the Congressionally Directed Medical Research Programs (CDMRP) as a consumer reviewer, bringing the lived experience of someone with NF into the research review process.
CTF Engage has been especially meaningful to me because I was diagnosed as an adult. There can be a unique experience that comes with suddenly entering the NF world later in life-trying to understand your own diagnosis while simultaneously realizing how much you didn't know. I want to help make sure adults with NF, including people diagnosed later in life, feel represented and know that their experiences matter too.
Family, Mountains and a Little Bit of Chaos
A woman and two children stand in a field with a mountain and forest in the background; the woman holds a blue mug and one child holds a fishing rod.I'm a wife and a mom to two hilarious, strong-willed girls. A lot of my life revolves around my family and honestly, that's how I like it. I'm happiest spending time with my husband and girls, being with friends, getting outside and just enjoying the everyday stuff together.
I love living in Colorado and being close to the mountains. I love getting outside and just being somewhere with a good view. I also love a cozy night at home, good food and finding any excuse to make something a little more fun than it needs to be.
Professionally and personally, I seem to have collected a very random assortment of roles. I have a background in Early Intervention, serve on the Colorado Interagency Coordinating Council, volunteer with my children's school, do some marketing and social media work for a family business and stay involved in advocacy and research-related projects that are meaningful to me.
I come from a long line of crazy cat ladies, and I have fully embraced my destiny. One of our cats, Quandary, even became a bit of an internet-famous "adventure cat" after my husband used her as part of his marriage proposal and we started taking her hiking with us in the Colorado mountains.
Erin's experience reflects why progress in NF must include better recognition and diagnosis, greater understanding of how NF affects people throughout their lives, and research shaped by the people living with the condition.
Through initiatives like CTF Engage, the Children's Tumor Foundation brings patient perspectives into research and treatment development, helping ensure that progress addresses the needs and priorities of the NF community-including adults who, like Erin, spent years searching for answers.
The Children's Tumor Foundation published this content on October 29, 2026, and is solely responsible for the information contained herein. Distributed via Public Technologies (PUBT), unedited and unaltered, on October 29, 2026 at 20:21 UTC. If you believe the information included in the content is inaccurate or outdated and requires editing or removal, please contact us at [email protected]