Beyond CF: A Rare Disease Conversation with the Goldbergs
We're honored to share that Judi and I sat down with Laura Bonnell for her Living with Cystic Fibrosis podcast — and the episode, "Beyond CF: A Rare Disease Conversation with the Goldbergs," is live now.
Laura is the founder of The Bonnell Foundation. Her two daughters live with cystic fibrosis, and her podcast has become a gathering place for the rare disease community. When she invited us on, the idea was simple: different diagnoses, same journey. CF and mitochondrial disease are not the same — but the road families walk looks an awful lot alike.
The conversation
We go back to the beginning: 2011, training for my Krav Maga black belt while my body quietly started failing me. The vision loss at work six months later. The doctors who suggested it was in my head. The week at the Mayo Clinic that ended with no answers. And then the pulmonologist — Dr. Karen Lehigh, who I still thank by name — who asked a question nobody else had thought to ask: have you ever considered mitochondrial disease?
Three years from first symptom to diagnosis. A muscle biopsy. Nine months waiting on genetic testing. And then the appointment where my doctor told me the good news and the bad news: yes, it's a real disease — and no, there's almost no research on the genes involved.
Judi talks about the caregiving side with her trademark honesty: 27 years of marriage, 14 of them on this road. One day at a time. The mornings she sets up my whole day before work. How the dynamic of a marriage changes when you rely on your spouse in ways most people never will — and how, somehow, it made us closer.
We talk about advocacy, and the balance I've come to believe in: scream at the top of your lungs to be heard — but don't shut out your doctors. They're your lifeline. If one won't listen, find one who will.
We talk about the books — the original I'll Have Mine Rare, illustrated a decade ago by a second-grade classroom, and the sequel we've been building ever since. About Hugs for Mito, the nonprofit chapter we closed to protect my health. About the MediXo ecosystem we're building now, and the 1% giveback pledge behind it.
And we close the way the conversation deserves: don't judge a book by its cover. You might look at me and think I look fine. My insides tell a different story. Invisible illness is real, and a little patience with each other goes a long way.
Listen
Simplecast: https://livingwithcysticfibrosis.simplecast.com/episodes/rare-relations-michael-and-judi-goldberg
YouTube: https://youtu.be/4OIUBZ-QN8o
Also available on Spotify, Apple Podcasts, and wherever you listen.
Connect with us
If rare disease has touched your life — as a patient, a caregiver, a clinician, or a friend — reach out anytime. We make ourselves available. Nobody should walk this road alone.
— Michael & Judi Goldberg
Our Journey
Comments