Most people in this community are very willing to discuss their specific stories, please visit this link to read several stories about coping with PXE from the perspective of oneself, one’s spouse, or one’s parent.
One Woman's Journey
When I had my first bleed in Feb 2004 I thought for SURE that I would be legally blind by Feb 2006, maybe sooner. I was CERTAIN of it... I felt doomed. Then I "got a grip"! Read JoAnn's journey.
A tongue-twisting and perplexing diagnosis. If you are reading this article, you or someone you love has been diagnosed with PXE. Your reaction probably depended on how the diagnosis was made and the type of information you received.
What follows are interviews with seven people who have had that trying experience. The interviews were written from different perspectives: self, parent and spouse. These are their stories, describing how they reacted and came to terms with PXE, the progression of the condition and their advice to people who have just found out they must live with the disorder.
Click on a name to read this member's biography from the viewpoint of Self, Parent or Spouse.