Plexiform Neurofibromas in Adults with NF1 | Dr. Angela Hirbe

Plexiform neurofibromas in adults with neurofibromatosis type 1 (NF1) can raise questions about tumor growth, symptoms, monitoring, and treatment. Join Dr. Angela Hirbe for an NF Midwest Power Hour exploring these NF1-related tumors and options for adult care. This presentation covers NF1 basics, plexiform neurofibroma growth, malignant peripheral nerve sheath tumor (MPNST) risk and warning signs, and treatment decisions involving surgery and medical therapy. Dr. Hirbe also discusses targeted therapies and MEK inhibitors, treatment side effects, monitoring, and next steps, followed by audience questions and discussion. Whether you are an adult living with NF1, supporting a family member, or learning about neurofibromatosis, this session offers information to help you better understand plexiform neurofibromas and prepare for conversations with your healthcare team. Subscribe to NF Midwest for more neurofibromatosis education, expert presentations, and community conversations. Share this video with someone who could benefit from learning more about adult NF1 care. CHAPTERS 00:00 Welcome and Introduction 01:05 NF1 Basics and Clinical Features 08:20 Plexiform Neurofibromas and Growth 12:50 MPNST Risk and Warning Signs 18:00 Treatment Decisions: Surgery and Medical Therapy 22:00 Targeted Therapies and MEK Inhibitors 29:30 Side Effects, Monitoring, and Next Steps 39:10 Discussion and Questions Thank you to SpringWorks for sponsoring this NF Midwest Power Hour. Information reflects what was available at the time of recording. Research, treatments, and care recommendations may have changed. ABOUT NF MIDWEST Since 1981, NF Midwest has connected children, adults, and families affected by neurofibromatosis (NF) and schwannomatosis with education, resources, and a supportive community. Serving Illinois, Indiana, Iowa, Kentucky, Missouri, and Wisconsin, NF Midwest helps ensure no one faces NF alone. Learn more and connect: NF Midwest: https://www.nfmidwest.org/ 2027 iNFo Fair: https://www.nfmidwest.org/care-progra... Power Hours: https://www.nfmidwest.org/care-progra... Education & Support: https://www.nfmidwest.org/care-progra... Free Packet of iNFo: https://www.nfmidwest.org/care-progra... Donate: https://give.nfmidwest.org/campaign/6... Contact us: https://www.nfmidwest.org/about/conta... This video is for educational purposes only and does not replace medical advice. Please discuss personal health questions and care decisions with a qualified healthcare professional. #PlexiformNeurofibromas #NF1 #Neurofibromatosis #AdultNF1 #MEKInhibitors #MPNST #NFMidwest