A very public advocate for PIDD issues passed away on October 6th. She had the same immune deficiency, diagnosed the exact same time age-wise (she's about 15ish years older), and seeing the same immunology practice.... We even have the same first name.
I don't know how she died, but at the end of June, at the IDF Conference, she looked robust and healthy and seemed full of passion about PIDD issues and the new Affordable Care Act provisions that would help us.
The news of this death hit me pretty hard. I see myself in her shoes and I wonder... is treatment much better for me than for her? What killed her? Will I die in a similar fashion? Who would I want to know? How would I tell them? Being that I live a good deal of my "disease life" online, I have to make sure that there's some way to let them all know when things happen to me. It's scary to think that so many of my friends exist primarily in my virtual world...
That's really beside the point of my post though. Seeing her obituary, seeing the things she's done, I'm proud to say I knew her and we were connected. I'm still frightened because I wonder if I will have a similar expiration date. I hope not.
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