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The unknown HPS’er

A few weeks ago I asked readers to pray for someone I referred to as “the unknown HPS’er.” This person, unfortunately, was like so many with HPS that go undiagnosed and that we can’t help much.

I learned today that this person passed away Monday.

Although only a few of us even knew about this person, I feel as though everyone with HPS should be remembered, and thus, although I can’t tell you much, I still want to honor this person’s memory.

This person lived in South America. They were already quite ill by the time we learned of the situation – too ill to make a difficult and expensive journey to the United States to go to the NIH.

We had so little to offer and felt so helpless. We tried our best to offer moral support – but what this person wanted, what we all want, is the cure. They found it hard to believe that in the United States, land of shiny hospitals and state-of-the-art care, that we didn’t have an answer. It ate at us as various family members reached out looking for help, hoping that somehow we’d deliver the magic answer.

We just didn’t have a magic answer to offer. Our hearts broke for this unknown HPS’er and the family that loved them so very much. We tried to tell them how our hearts ached for them, and for all the other HPS’ers that find themselves battling pulmonary fibrosis. We told them that even here we lose friends regularly to this heartless disease. We tried to tell them that they weren’t alone, but still, I can’t help but think that even with our communications (made possible by Carmen) that they must have felt so very alone.

We told them that we’re working on treatments, that progress is being made – but that it likely wouldn’t arrive in time.

This unknown HPS’er never stopped fighting for life. They never stopped trying to find answers. They fought the battle so bravely and without so many of the amenities we enjoy here, even if we don’t have a cure.

It helped us, even if it’s in a small way, to know this person’s story. It helped us to know of yet another corner of the world where HPS has occurred to prove, yet again, that while HPS is more common in Puerto Rico, it is a worldwide and universal problem.

Please pray for this person’s family, even though you don’t know who they are. They are going through such a difficult time right now.

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