Vicki McCarrell had always dreamed of becoming a mother. When she gave birth at age thirty-eight to her son Sean, life seemed complete. Yes, he had the full facial paralysis typical of Moebius syndrome, but otherwise, he looked perfect to her. Indeed, at the hospital near her home in Van Nuys, California, she was given a diagnosis and not much else. Nobody told her how to feed a baby who could not suck or even warned her that it would be an issue.| Susannah Fox
Jill Dopf Viles suspected a killer was hiding in her family’s genetic code. Symptoms popped up among her siblings, her father, her uncle, her grandmother, but, despite 15 annual visits to the Mayo Clinic, no clinician suggested anything more specific than muscular dystrophy. Viles studied genetics in college and spent hours in the library, reading […]| susannahfox.com
Jill Dopf Viles suspected a killer was hiding in her family’s genetic code. Symptoms popped up among her siblings, her father, her uncle, her grandmother, but, despite 15 annual visits to the Mayo Clinic, no clinician suggested anything more specific than muscular dystrophy.| Susannah Fox
Alex Durussel-Baker was on a plane taxiing down a runway when she found out she had Type 1 diabetes. She had been increasingly tired and had lost a lot of weight without meaning to, so had gone to a clinic where she lives in Edinburgh to get checked out. The nurse was reassuring – even […]| Susannah Fox
Imagine the nerves behind one of your eyes suddenly bursting into flames of pain, relentlessly burning for hours. The pain recedes, then roars back, day after day. You try to describe what is happening inside your head to your family, your clinicians, even yourself, but words fall short. It is the worst pain a human can endure.| Susannah Fox
This post is the latest in my series of “Wow! How? Health” stories, also shared on LinkedIn if you want to follow the conversation on that platform. When Michael Katz was diagnosed with multiple myeloma, he was fortunate to connect with someone who had recently completed treatment, the “just-in-time someone-like-me” that could guide him. He vowed to do the […]| Susannah Fox
Jean Nidetch and six friends decided to try to lose weight together, meeting at her home to encourage and support each other in their quest. Their success drew more friends and in May, 1963, Nidetch launched a company based on the idea that peer support is key to weight control. Over 400 people showed up to the first official meeting in Queens, New York.| Susannah Fox
My phone started blowing up with texts from friends and family members yesterday morning, alerting me to a New York Times magazine cover story by Amanda Hess, “My Son Has a Rare Syndrome. So I Turned to the Internet” (gift link). Hess writes beautifully about her experience being dropped into the medical maze and her […]| Susannah Fox
This post is the latest in my series of “Wow! How? Health” stories, also shared on LinkedIn if you want to follow the conversation on that platform. It starts with a story that long-time readers of this blog will hopefully recognize! Ten years ago this week my friend Delina texted me: I am sweeping the kitchen and just found […]| Susannah Fox
Most stakeholders in biomedical innovation – scientists, clinicians, patients, caregivers, funders, regulators – recognize each other as allies in the fight against disease. But they often lack shared principles and practices to guide the work they do together. For example, a research organization may say they value patient input, but they do not recognize their […]| Susannah Fox
The latest in my series of stories that hopefully make you say, “Wow! How did they come up with that?” Bradley Burnam loved his job as a medical device sales rep because, as he puts it, he got to play doctor: wear scrubs, visit hospitals, and work with patients. But during one site visit he […]| Susannah Fox
My book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, is now available in paperback. | Susannah Fox
