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Finding Comfort in the Rare Disease Community

Before I was diagnosed with sarcoidosis, I’d never heard of this disease. No one I knew had heard of it, either, except, as my mom insists, in the differential diagnosis on the TV procedural “House, M.D.” Even then, it was never the answer. No one actually had sarcoidosis.

Going to the Doctor Isn’t Always an Easy Decision

Earlier today, I scheduled appointments for my husband and me to see our primary doctor and pulmonologist. I also rescheduled appointments with my cardiologist, neurologist, endocrinologist, and ophthalmologist, all of which I’d had to cancel recently because I was too sick to go to the doctor. There really is such…

Take That Win Where You Can

Last month, I participated in my biggest race ever, the Brooklyn Marathon. The race weaved through various neighborhoods in Brooklyn, passing less than a block from my apartment. With over 20,000 runners, it was by far the biggest crowd I’ve ever run with. And while in 2022 we have learned…

Taking Responsibility for Healthy Progress

For the past few days, I’ve been taking an inventory of my life. I guess living with a chronic illness will make you do that. Now, don’t get me wrong. I’m not feeling sorry for myself. I guess I was feeling like I needed to take inventory of what…

Immune NKT Cells May Suggest Early Heart Involvement

The blood levels of natural killer T-cells (NKT), a type of immune cell, are reduced significantly in sarcoidosis patients with subclinical signs of heart involvement relative to those without, a small study shows. Notably, low NKT cell levels were associated significantly with imaging markers of heart inflammation, suggesting that…