In order to better understand his condition, Adam Lawrence asked others with HSP to answer some basic questions about HSP for a survey. While the answers will not surprise most of the people with HSP, it is interesting to see how the disease presents itself in others. For example, 80% of people were mis-diagnosed and, for 77% of HSPers, the disease progresses very slowly.
For those new to HSP, these numbers may give you some comfort and help you make sense of what is happening today and what may happen in the future.
Many thanks to Adam for undertaking this important work and giving the community some perspective.
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
We operate out of the strength of our community, caring friends and sponsors. Your help makes a difference! Our volunteers give many hours of their time annually, and the opportunities to help are as varied as our helpers. Read more.