As we approach Rare Disease Day on Feb. 28, I reflect on the pros and cons of the word “rare.” Apart from my chronic illness, I love being unique. There’s something wonderful about having an uncommon skill or piece of knowledge. It’s partly the whimsy…
In May 2016, I landed in the hospital for a week. Doctors wanted to find out how I had managed to gain 26 pounds from fluid retention in just two weeks. For 12 hours, Sunday night doctors and nurses poked, prodded, and questioned me. Then their shift changed, and…
Passion, sadness, anger, frustration, and grief are the emotions hardest to feel, but they inspire my best writing. Today, I write a little teary-eyed from a place of grief — Bionews Services family member Serena Lawrence passed away on Sept. 26. The internet can be a wonderful place.
Since I began writing this column, I’ve had many people reach out to me. Sometimes it’s because an article deeply resonated or helped them express something for the first time. Occasionally readers will deliver a virtual hug because what I’ve described is too familiar and hits close to…
I write this in a state of disbelief and heartbroken shock. Not long ago I found out about the passing of someone whose presence merely graced my life, yet left a lasting imprint. I’d love to dedicate this column not only to one wonderful and strong woman,…
https://www.youtube.com/watch?v=l0-IFeefjAg In this Healthwise video, listen to members of Lupus Pennsylvania talk about how important it is for lupus patients to share their personal stories in support of others in the lupus community. What’s it like to be teenage girl with lupus? Find out here from Frankie. The organization’s…