The HELP Survey: Help for All PXEers


  PXE Vision: By and For PXEers
  by Pat Manson

The HELP Survey: Help for All PXEers

July 2015

 


I recently completed PXE International’s HELP Survey, and I hope you will do the same.  The survey is important for all PXEers, but I’ll come back to that.  Because I’m legally blind, I feared that filling in the on-line form might be too great a challenge for me, but there was nothing to worry about.  PXE International provided me with a Navigator (mine was Research Coordinator Farrah Asgari-Majd), and with her help, I was able to complete the survey easily.

So what’s so important about the HELP Survey? 

The short answer. The survey gives each of us the opportunity to play a role in determining the direction of future PXE research.  With its HELP survey, PXE International has given each of us a voice. If you take the survey, your voice will be heard, counted even.

The long answer. For years now, researchers have told us that PXEers store, rather than process and eliminate, deposits of minerals, calcium in particular, throughout the body. These deposits cause the all-too-familiar manifestations of PXE: skin lesions and other abnormalities, retinal tearing and bleeding, GI bleeding and cardiovascular problems.  While it has generally been believed that the deposits elsewhere in the body pose no risk for PXEers, there remains some suspicion that there may be other, as-yet-unconfirmed manifestations.  That’s one of the questions the HELP survey will help answer.

In responding to the survey’s questions, each PXEer provides his personal and family health history. (Some of the questions explore the incidence of the other suspected manifestations of PXE.) That data will be combined with that of thousands of other PXE families, thereby adding to the growing body of knowledge of PXE.

Participating in the survey was a big deal for me.  Although I’m the first in my extended family to be diagnosed with PXE, a number of my relatives have experienced some of the health problems that can be, or are suspected of being, caused by PXE. Moreover, my family has a “rich” medical history.  My father had 20+ surgeries; my sister takes 30 prescriptions.  They’re representative, I’m afraid. At 62, I’m beginning to catch up. Do I think all these problems are related to PXE?  Of course not, but maybe one or two.  I’m happy to let the experts answer that question.  By completing the HELP Survey, I’ve helped them a bit. And, in an offbeat way, I’ve even honored my family by adding the info I have on their unhealthy lives to the overall mix. Why not join me?

Complete the HELP Survey

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