The Hidden Cost of Chronic Illness - Ep. 11

Living with a rare disease isn’t just a medical battle — it’s a financial one too. In this episode, I open up about the hidden costs of managing Mycosis Fungoides, a rare form of cutaneous T-cell lymphoma. I share how, even with insurance, I pay more than $3,500 a year out-of-pocket for prescriptions and specialist visits — not counting additional expenses like dental care, vision needs, and over-the-counter medications.

I also cover the challenges of budgeting with a flexible spending account (FSA), the stress of surprise medical bills, and the critical role of pharmaceutical financial assistance programs. I shed light on the often invisible financial and emotional toll chronic illness takes, offering real talk on why planning ahead matters — and why no one should have to navigate it alone. If you or someone you love is juggling rare disease costs, this candid conversation is for you.