This post was originally here:
Another Cushing's patient has died :( Over the years that I've been running the Cushing's sites, we have lost at least 16 Cushies - about 2 a year - that I know of. I wonder how many others there have been that I don't know about. Or they weren't even diagnosed yet at the time that they died.
Somehow, we have to get the system improved, to save the lives of more Cushies, known and unknown to us.
Even before I heard of the Internet, while I was waiting for surgery at NIH, a woman with Cushing's died. I would not have known except that there was an article about her in my college alumni magazine. She had been my age, lived in my city, graduated from my college with my major the same year as I did, was also a teacher, had my doctor... It could have been me. Thank goodness I didn't read about that until after my surgery.
The patients I have known about who died - 3 I have known very well. We had gotten to be good friends over the years. We managed to share good times, laughs, times of thoughtfulness, times of sadness, many phone calls and visits, adoptions of children, births of grandchildren, even a vacation! Just like "normal" friends. But we were bound by the bonds of Cushing's and we understood each other.
Even though I didn't know Martha who died last night, her death saddens me deeply. Too many deaths, too young.
Someday, I'd love to meet a Cushie in her 90's or older!