Hereditary Inclusion Body Myopathy (HIBM)

I’m not quite sure to what to attribute the extreme joy and gratitude I have been experiencing this summer. It started on my birthday, about six weeks ago, when I woke up fever-free for the first time in seven days. I was just so ecstatic to feel healthy again. It didn’t hurt that I went [...]

By late 2013, after almost two years working in Haiti with UNICEF, I was preparing to move to the United States, country #10 in the tour of my international career. Knowing how fiercely patriotic Americans are, and wanting to be respectful of my new host country, part of that preparation was learning the words to [...]

Two weeks ago, I happily celebrated my 42nd birthday, a day of beautiful memories made with my loving husband and close friends. Happy, genuinely happy, is the best way to describe the sentiment I floated in, all the while with a gnawing reminder to write about why this year in particular, is significant. It’s one [...]

“We don’t know the future, much less control it. We like to think we do, but that never turns out to be true. And yet we continue to believe in the illusion of control. We face a chaotic and complex world, and seek to control it however we can.” It was recently Undiagnosed Day. According to [...]

At age 20 I set out to complete a bachelor’s degree in industrial design. At the same time, I began experiencing mysterious physical symptoms, symptoms that would lead me to an unimaginable future. I went from kicking soccer balls, running, and leading an active life to making use of leg braces and canes, and today, [...]

The physician who came to see me happened to be a Persian Jew. After listening to my story and examining me, he diagnosed a rare, genetic, progressively debilitating neuromuscular disease found among Persian Jews called hereditary inclusion body myopathy, or HIBM. This is a muscle-wasting disease that manifests in the prime of one’s life and [...]

The physician who came to see me happened to be a Persian Jew. After listening to my story and examining me, he diagnosed a rare, genetic, progressively debilitating neuromuscular disease found among Persian Jews called hereditary inclusion body myopathy or HIBM. This is a muscle-wasting disease that manifests in the prime of one’s life and [...]

Eat healthier. Exercise more. Get more sleep. Meditate. Read more books. It’s been years since I’ve made New Year’s resolutions. I used to relish the opportunity to set intentions from a clean slate. It was fun to challenge myself. But after my diagnosis, when my scale of what mattered in life forcibly recalibrated, none of [...]