The medical literature is peppered with reports that hint at what causes the symptoms of PE, and at possible connections with other body problems. There are also reports on post-operative problems, again making cautious suggestions about causes. Observations shared among PE patients and their families can provide more insight. Going through these may lead us to a better picture of what sets the stage for PE happening in the first place, of how to prevent it occurring in the next generation, and of the best paths to follow in correction, minimising after-effects and maximising healing.

"Brainstorming" among all of us whose lives have been touched by PE -- especially now that the Internet opens new doors of contact and research for us -- is a great way to work on clarifying the picture! This is lay research -- "non-professional" folks using their own fresh viewpoints to search for causes and connections. We've got the time and motivation to pursue the issues, to search for answers.

We're looking for patterns, for similar circumstances of first occurrence; for other conditions that "just happen" to be present along with the PE or PC; for who else in the family tree also had these symptoms; for what might have triggered post-op problems, and what resolved them.

If you have ANY observations and insights you'd like to share, please do pass them on! We hope to soon set up a guestbook-style forum on this site so that all can get involved. Until then, please do send your ideas to us via e-mail: [email protected]

To start the ball rolling, here are some of the observations and discoveries Gina and I have made over the past two years of online research, talking with other PE families, and living with PE and through corrective surgery.