Every year after conference we start the Hundred People Search (HPS) all over again. It isn't that we ever want to find anyone with HPS. Frankly, we'd all be happy at the HPS Network if we went out of business! It's our goal and dream.
The truth is, however, that there are people out there with HPS that don't know it. That can be dangerous. It can even be life threatening in an emergency. And, there are people out there with HPS who are diagnosed, but don't know about the HPS Network. Because HPS is so rare, they are not likely to hear about the latest science, or clinical trials etc. from their own physicians. It is also, for many of us, an incredible thing to be able to talk to people who get it - and get it all. Not just the albinism, or the low vision or the bowel disease or the lung issues or the bleeding, but what it is like to cope with some or all of these things together.
I think people really underestimate that. I made friends at my hospital during my transplant process with pulmonary fibrosis, but they could drive to pulmonary rehab. They could see the numbers on the oxygen tank regulator or the oxygen concentrator. They couldn't give me tips about how to manage these types of issues. My medical staff, while awesome and kind, were lung experts...not low vision experts. And the low vision experts had no idea of the issues that come when you have to work extra hard to breathe. It was my HPS family that got me through that.
Even if you don't have the lung disease....there are lots of other things that come up. Things that probably you'd never think about until the issue arises. So, this is why we do the Hundred People Search. We do it so no one is left behind. We do it so the next generation of people with HPS can stand on our shoulders and have totally different lives.
So, we are kicking off this year's Hundred People Search with two new members. This puts us at 98 to go!
We never reach 100. Last year we added 39 new HPSers to the registry. That might not sound like a lot, but we are rare. I do worry, however, about the ones still out there.
The truth is, however, that there are people out there with HPS that don't know it. That can be dangerous. It can even be life threatening in an emergency. And, there are people out there with HPS who are diagnosed, but don't know about the HPS Network. Because HPS is so rare, they are not likely to hear about the latest science, or clinical trials etc. from their own physicians. It is also, for many of us, an incredible thing to be able to talk to people who get it - and get it all. Not just the albinism, or the low vision or the bowel disease or the lung issues or the bleeding, but what it is like to cope with some or all of these things together.
I think people really underestimate that. I made friends at my hospital during my transplant process with pulmonary fibrosis, but they could drive to pulmonary rehab. They could see the numbers on the oxygen tank regulator or the oxygen concentrator. They couldn't give me tips about how to manage these types of issues. My medical staff, while awesome and kind, were lung experts...not low vision experts. And the low vision experts had no idea of the issues that come when you have to work extra hard to breathe. It was my HPS family that got me through that.
Even if you don't have the lung disease....there are lots of other things that come up. Things that probably you'd never think about until the issue arises. So, this is why we do the Hundred People Search. We do it so no one is left behind. We do it so the next generation of people with HPS can stand on our shoulders and have totally different lives.
So, we are kicking off this year's Hundred People Search with two new members. This puts us at 98 to go!
We never reach 100. Last year we added 39 new HPSers to the registry. That might not sound like a lot, but we are rare. I do worry, however, about the ones still out there.
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