Myasthenia gravis (MG) is nothing short of fickle. We are unwelcome companions, thrust into its foibles and constrained by its unpredictable nature. Subsequently, MG has made my life an uncertain seesaw. In the blink of an eye, I have danced near death, and in the next, I’m seemingly…
Hospital visits that end up going less than smoothly either make or break your spirit. Physical strength comes and goes in the lives of the chronically ill, but it’s our emotional toughness that gives us that mind-boggling endurance no healthy person can seem to comprehend. It is almost like a…
Two timed walk tests were found to be highly reliable for the measurement of exercise capacity in patients with mild to moderate generalized myasthenia gravis (MG), a study reports. The six-minute walk test (6MWT) and the…
My husband and I have a cat and two dogs because I believe no home is complete without pets to love. Our animals sleep in our bed and come along on family trips — they are our “fur-children.” As my health has declined, I’ve come to see these pets as…
Half a year has gone by since disgraced pharma executive Martin Shkreli was sentenced to seven years in federal prison for securities and wire fraud while heading San Diego-based Retrophin. As founder and CEO of another company (then known as Turing Pharmaceuticals), in late 2015 Shkreli bought the rights…
Life is filled with the impatient burden of waiting as we eagerly look toward important milestones, big events, and even the outcomes of the unexpected — both good and bad. And while we can be restless as we keep our eyes on the horizon, these measured moments of waiting…
If I wear a high-cut top or a scarf, you won’t see the 15-cm (almost 6-inch) line plunging from my neck to my cleavage. The scar is a big giveaway that I am not a medically stable person. One of the reasons I don’t feel very self-conscious about my…
Myasthenics adjusting to reduced physical abilities must make lifestyle adaptations. To ensure the continuation of my tertiary studies, I’ve acquired disabled parking on campus. Applying for the placard dented my pride. I struggled for months before finally admitting to needing disabled parking. I could no longer walk the distance from…
What do you do when told there is a treatment that could put you into remission, but your health insurance denies it because there “isn’t enough clinical evidence”? There will never be enough clinical evidence for my rare disease because there are not enough people affected by the condition to make…
More than 700 medical experts, pharmaceutical executives, patient advocates, and others are expected to converge on Washington, D.C., next month for the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit. The Oct. 15-16 event, sponsored by the National Organization for Rare Diseases (NORD), takes place at the…
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