The Children's Tumor Foundation
10/19/2026 | Press release | Distributed by Public on 10/19/2026 08:24
NF Knowledge Series: A Teen’s Guide to NF1
Growing up brings new experiences, responsibilities, and questions. For teens living with neurofibromatosis type 1 (NF1), those questions may include understanding changes in their health, navigating friendships, advocating for themselves, and preparing for adulthood.
These topics were the focus of a recent Children's Tumor Foundation (CTF) NF Knowledge Series webinar, "A Teen's Guide to NF1." The session introduced CTF's new resource, Living with NF1: A Guide for Teens, and featured Kara Anstett, MS, CGC, a genetic counselor at NYU Langone Health, alongside young people sharing their experiences with NF1.
Throughout the conversation, one message remained clear: every person's experience with NF1 is different, and understanding the condition can help teens feel more confident navigating what comes next.
View our new NF1 for teens web page.
Understanding NF1 During the Teen Years
NF1 is a genetic condition that can cause tumors to develop on nerves throughout the body. It can also affect learning, vision, bones, and other health aspects. Symptoms and their severity vary significantly from person to person.
Anstett explained that certain NF1-related features, including café-au-lait spots, learning challenges, and some bone differences, often appear during childhood. Other changes, such as skin neurofibromas, may become more noticeable during adolescence or adulthood.
Puberty and growth spurts can bring additional considerations, including monitoring for scoliosis and changes in existing symptoms.
Anstett also encouraged teens to discuss headaches, pain, sleep difficulties, emotional health concerns, and other changes with their healthcare team. Understanding what is typical for their own bodies can help teens recognize when something needs attention.
Finding Support at School
The webinar also focused on school. Students with NF1 may face challenges with attention, learning, organization, or other skills that affect their education.
Anstett discussed resources such as Individualized Education Programs (IEPs), 504 Plans, and educational evaluations that can help identify students' needs and appropriate supports.
A young woman with long blonde hair, wearing a gray "BORN A FIGHTER" t-shirt, poses with her arms crossed.Holly
During the teen Q&A, college student Holly B. shared her experience navigating school while managing NF1-related appointments and treatment side effects.
Holly emphasized that asking for help is an important part of succeeding in school. She encouraged students to identify trusted teachers or staff members who can help communicate their needs and connect them with support.
"I think it's okay to be nervous about not knowing what adulthood is going to look like," said Holly. "I think getting support and learning what works best for your day-to-day life (helps a lot)."
The discussion reinforced that accommodations don't give students an unfair advantage. They help students access the education and opportunities they deserve.
Talking About NF1 with Friends and Partners
Deciding whether to tell others about NF1 can feel complicated, especially during the teen years.
Anstett emphasized that sharing a diagnosis is a personal choice. Teens can decide when, how, and how much information they feel comfortable sharing with friends, classmates, or someone they are dating.
A person with glasses and a facial difference sits on a chair, holding a phone, displaying a forearm tattoo that reads "End NF." Tattoo supplies are visible in the background.Quentin
Quentin L., a recent high school graduate, shared that he explains NF1 by connecting it to familiar interests, like sports and cars, to make medical information easier for his friends to understand, which he also echoed recently in his Story of NF.
Anstett encouraged teens to start with simple explanations and practice conversations with people they trust.
The takeaway was that there is no single right way to discuss NF1. What matters is feeling comfortable sharing the information and recognizing that supportive relationships can make a meaningful difference.
Understanding Genetics and Future Choices
As teens approach adulthood, questions about genetics, relationships, and family planning may become more important.
Anstett explained that NF1 is an autosomal dominant genetic condition. For a person with NF1, each child has a 50% chance of inheriting the NF1 genetic variant.
However, inheriting NF1 does not mean a child will experience the condition in the same way as their parent. Symptoms and severity can vary widely, even within families.
Anstett also discussed reproductive options and emphasized that family planning decisions are personal. Genetic counselors can help individuals and families understand inheritance, available options, and future considerations.
Taking Ownership of Your Healthcare
The transition from pediatric to adult healthcare can begin well before someone turns 18.
A young girl smiling while sitting on a wooden stool, wearing a T-shirt that reads "Born Fighter."Shae
Anstett encouraged teens to take an increasingly active role in appointments by asking questions, learning about their medical history, and understanding why they see different specialists.
"You're really the most important person in the room at your doctor's appointment."
During the discussion, Shae, a high school junior, shared that she has started speaking up more during appointments and bringing her own questions and concerns to her doctors.
"I really advocate for myself and speak up more," said Shae. "Instead of my parents doing it for me, I ask questions about any concerns that I have."
Anstett also recommended keeping a medical folder containing important records, including appointment summaries, imaging reports, treatment information, and healthcare provider contacts. Having these documents organized can make it easier to transition between providers, move away for college, or manage care independently.
The goal is not to take on every responsibility at once, but to build confidence and independence over time.
As the webinar concluded, the teen speakers reflected on uncertainty, self-advocacy, and what it means to grow up with NF1.
Their experiences highlighted that living with NF1 can bring challenges, but it does not define every part of a person's life or future.
With reliable information, supportive relationships, and opportunities to connect with others who understand, teens can feel more prepared to make decisions about their health and pursue their goals.
Click here for more information about our NF Knowledge Series webinars.
The Children's Tumor Foundation published this content on October 19, 2026, and is solely responsible for the information contained herein. Distributed via Public Technologies (PUBT), unedited and unaltered, on October 19, 2026 at 14:24 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]