Last week the HPS community lost an icon. Carmen Munoz was one of the early members of the HPS Network. We owe her a lot. She was one of the early HPS’ers to go to the National Institutes of Health to participate in research on Hermansky-Pudlak Syndrome. She participated in the Phase II study of Pirfenidone, a drug we hope will help the pulmonary fibrosis of HPS someday.
Carmen was one of those people everyone knew. She’d tell you herself that she was “loud” and very, very proud of her Puerto Rican roots. If you ever found her annoying (and we all did at times which she’d tell you herself) you quickly got over it because Carmen had a heart of gold. She’d do anything for anyone. She wanted the best for her HPS brothers and sisters.
Carmen looked forward to the HPS Conference every year like a small child looks forward to Christmas morning. She attended every year, and every year was in tears when it was time to go home.
She always sat in the front and championed remembering our HPS brothers and sisters who had gone on to heaven. Carmen had watched several of her own siblings die of HPS.
She was the proud mother of a son. I’ll never forget when he was accepted to college how she beamed, even over the phone. Carmen didn’t get a chance to benefit from an education, but she was so pleased her son would.
Although she developed the pulmonary fibrosis of HPS in the 90s, in the end it wasn’t the lung disease she battled for years that got her.
We always knew Carmen was tough. We never really knew just how tough until the final two years of her life. She experienced complications from bowel surgery, made necessary by the Crohn’s disease of HPS. While in the hospital, she contracted a hospital-borne “monster bug.” For two years she was never able to heal completely from the surgery, or fight off the mounting complications of infection.
I can’t imagine being hospitalized for two years, but Carmen endured the experience with such a positive attitude and a closeness to God that amazed everyone who came into contact with her.
While I don’t think Carmen would want us to wallow in our sadness about losing her, I do think it would mean a lot to her to know she was remembered. She championed the idea that we’d never forget those lost along the path to the cure. Now, she is one of our HPS angels.
I think she’d love it if we raised a glass in her honor and enjoyed ourselves.
When I think of Carmen, I can’t help but have the image in my mind of her arriving in heaven to see all of the HPS friends she lost over the years. I can imagine her entering the gates of heaven and saying something along the lines, “Okay God, I’m here. Now, we’ve got to have a talk about HPS. What do you plan to do about the cure?” We couldn’t have a better angel advocate in heaven.
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