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…
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Despite having a support group and talking with others who have the same condition, I haven’t gleaned everything I need to know about pulmonary fibrosis. I’m still walking in the shadows of this disease, trying to find a semblance of my pre-diagnosis self. Someone in my support group asked,…
Last April, COVID-19 took up residence in our house again — or so we thought. My husband, Jonny, had a raging set of symptoms, and I had a sore throat. Our at-home tests gave mixed results. After a week of quarantining, our PCR tests came back negative. Negative?…
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…
Not having control over a situation is one of the worst feelings; I wouldn’t wish it on anyone! Unfortunately, many patients living with chronic illness often feel this way, and we just have to learn to live with it. Following my 2016 diagnosis of idiopathic pulmonary fibrosis (IPF),…
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…
I always try to find meaning and purpose in the smallest of things, and that practice led me to a realization the other weekend. I was trying to nurse back to health one of our hens, which had become ill in the past month. We did everything we could to…
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…
