A rare diagnosis can sit quietly in the background for years, until one day a scan makes it real. That’s what happened for Will Ruddell, who joins us to share his life with Neurofibromatosis Type 2 (NF2), a rare genetic disorder linked to slow-growing tumors in the brain, spine, and along nerves. Will grew up watching his father deal with serious medical issues, then found out at 26 that he also had NF2 after a migraine led to an MRI and life-changing answers.
We talk honestly about what happens after the words “you have tumors” land: the scramble to find the right specialists, the Stress of navigating care without insurance at first, and the reality that NF2 is still not fully understood. Will explains symptoms that shaped his everyday life, including vocal cord paralysis from a neck tumor and nerve damage that affects hand and foot movement. We also get into mobility decisions, surgery timing, and why “preparing” is hard when progression looks different for everyone.
Beyond the medical side, we focus on what keeps a person steady. Will shares the role of his wife and Family support, how passion and motivation help on difficult days, and where to look for NF2 resources, support groups, and research programs like the team at Moffitt Cancer Center. If you want a clearer picture of NF2 symptoms, treatment options like infusions and clinical trials, and how to show up for someone living with a rare disease, this conversation is for you.
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