I participated in a study conducted at the National Institute of Health (NIH) a couple of years ago to determine the disease process of Lymphangioleiomyomatosis (or LAM, my rare lung disease), and during my stay on-site, I had a chaplain visit me in my room to see how I was doing. She was a lovely,... Continue Reading →
7. When the emotions of living with a rare disease finally hit
I went out to lunch with a friend some time ago, and over kale salads and mineral water she asked “So, how are you doing?” I took that as my invitation to lament when I think she may have been looking for something a little more uplifting. So I responded with how isolating it’s been... Continue Reading →