When is a larger number the better choice? It depends. Recently, I’ve noticed some people in the pulmonary fibrosis (PF) community embracing numbers in studies without understanding their context. In terms of dollars, bigger numbers are better if you’re talking about savings, but smaller numbers are better if you’re…
How much of a powerhouse in the world of rare disease medicine do you have to be to effect change? Advocacy is tough, especially when you’re trying to influence organizations that are responsible for federal policy. So where to start? How about starting with a single voice? The biblical story…
Have you ever experienced a period in your life when nothing seemed to go right? While that may seem an odd question for those in the rare disease community, in my case, sadly, it’s not rhetorical. June has altered some of the best-laid plans, and that trend has flowed into…
July is a month of celebration at our house. Though it begins with the Fourth of July, my personal “Independence Day” is on July 10 — the day I received a double-lung transplant in 2021. It’s a celebration tempered with reverence for the beautiful lungs my donor gifted me.
Adversity is something rare disease patients face on a regular basis. It can take many forms, but it often involves facing a challenging situation or doing something against all odds. When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I don’t think I had any…
What choices do you have when you have idiopathic pulmonary fibrosis (IPF) and lung transplant isn’t an option? I’ve been told by more than one patient that they were told to go home and spend the time they have left enjoying a rocking chair on the porch. Whether that is actually what they…
The sound of overhead explosions and bright flashes of light caused by fireworks. The sound of squealing tires followed by breaking glass. The smell of smoke and the sound of a smoke detector. The sound of the alarm on your oxygen concentrator in the middle of the night. Each of…
The calendar of any rare disease patient is a marvel, with its complexity and efficiency. I’ve become both a master and a failure in constructing mine. I continue to miss the mark on making time to live life to the fullest. My schedule gained new elements when I was…
My name is Sam, and I read a lot. I enjoy reading. I’m not asking for help or seeking an intervention. I read a wide variety of material and have favorites across many different genres. In the fiction category, I enjoy the Mitch Rapp series, originally by Vince Flynn. In…
Have you ever tried to explain to someone who has never experienced a rare disease how patients can develop lasting relationships with their care team? I have, and it’s often met with skepticism. Many people see their physicians only once or twice a year. But that isn’t the case for…
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