Tuesday, March 17, 2015

A new year for the Hundred People Search!

We are kicking off a new year for the Hundred People Search (HPS) and we've got a great start! We have added three new HPSers to the HPS patient registry. We just have 97 to go! Grin! 

The Hundred People Search (HPS) is a yearly campaign in the Hermansky-Pudlak Syndrome community to encourage those with HPS, and our supporters, to help those with HPS find a diagnosis and get registered. 

This is so important for several reasons! 

First, one of the most dangerous things about having HPS is not knowing it. A recent study (that I have on my list of things to blog about) showed that, on average basically, it takes seven years to get an HPS diagnosis. Too many times over the years we've seen someone, unaware they have HPS, end up in a crisis because they didn't know they had a bleeding disorder. Not knowing doesn't give you the chance to learn about, and do, all the things that can keep you healthier longer and improve your quality of life. It doesn't give you the chance to avoid dangerous bleeds that could have been prevented, or early treatment of GI disease. 

Second, there are things available to help. We now have the first treatment (not a cure) for pulmonary fibrosis. We now have access to lung transplants. There are things one needs to know about treating the bleeding of HPS, and it is a changing picture. 

Third, most primary care physicians, even specialists, aren't even aware of HPS, let alone up to date on the latest developments. For better or worse, it is often up to us to be in the know. If you don't have a diagnosis, you can't even begin to climb and conquer that mountain. 

Fourth, while it may not be for everyone, for many of us there is something therapeutic about being part of the solution. Our future is not a set thing, but it is up to us to change it. It is up to us to work on finding the cure. No one is going to do it for us. They might do it with us, but no one cares about curing HPS quite like the people who are impacted by it every day. 

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