Elsie joins her older brother Benny in heaven. Benny passed away from HPS several years ago.
Elsie was a trail blazer in the HPS community. She was the first person to volunteer for the phase III drug trial of Pirfenidone to treat the pulmonary fibrosis of HPS. She was the first patient to be accepted into the study. She was the first person to raise money for her transplant with the help of the HPS Network (a new program).
Elsie’s brother had tried to get listed for a lung transplant, but at that time transplant centers were leery of even evaluating patients with HPS. Elsie was one of the first to benefit from the ground work laid by the first group of HPS transplant patients.
I know how much she appreciated the guidance she received about the transplant process from Janet, and Rebecca, and Nancy and Wilson. She took their words to heart, and it helped her get through the process.
I knew Elsie was talking to other HPS’ers that are currently seeking transplants, but I hadn’t quite realized the depth of their conversations. Elsie was a good listener, and she kept confidences. so many people felt they could share their inner most thoughts with her.
Sadly, her new lungs just never came.
Besides being such an advocate for HPS, and a trail blazer for the research, Elsie was a special person. We got to know each other because of HPS. We became close because of our HPS shared experiences. But, we became sisters by choice because Elsie was just Elsie.
I’m feeling so much loss right now, and it feels strange to not be able to pick up the phone and talk to Elsie about it. We cried together, and we laughed together. The world is just never going to be the same place without her.
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