Adult NF1 Care, Health Maintenance, and Treatment Adherence Challenges

In this segment, the physicians explore the broad health maintenance needs and everyday challenges faced by adults with NF1 as they move further into their twenties and thirties. One physician notes that, beyond cancer surveillance, adults must manage cutaneous neurofibromas, increasing vascular risks, recurrent headaches, and hypertension—conditions that may signal vasculopathy or serious complications such as pheochromocytoma. The discussion highlights the importance of regular blood pressure monitoring and educating patients that even mild hypertension should not be ignored in the NF1 population. They also address treatment adherence, emphasizing that adults may discontinue MEK inhibitor therapy at the first sign of side effects, unlike pediatric patients whose parents manage their care. Clear expectations, proactive side-effect management, and structured “treatment contracts” help sustain adherence. Cognitive challenges—including ADHD, executive dysfunction, and intellectual disability—further complicate adult independence, employment, and insurance continuity. The physicians underscore the need for ongoing healthcare engagement, even when symptoms seem minimal, because NF1 remains a lifelong condition requiring continuous surveillance.