Test the vision in each eye every day. Early detection of a vision problem increases the chance of saving eyesight through timely treatment. The Amsler Grid is a simple test of vision quality that detects even minor changes when they first occur. This easy test only takes a moment for each eye. If you notice any changes in the appearance of the grid such as distortion, blurring, discoloration, dark or missing areas of the grid, or any other changes, call and visit your retinologist immediately! Do not wait to see if the changes will clear up with no intervention.
While PXE was described in medical literature as early as 1896, relatively little was known about it until the second half of the last century. In fact, our knowledge of PXE—its causes, its effects, possible treatments, etc.—has grown dramatically over the last decade or so. What we now understand about PXE is in many respects quite different from, at times even contradictory to, what was earlier believed. This has resulted in a number of beliefs that were once considered fact but which we now know to be incorrect.
There are currently two general hypotheses regarding the cause of PXE – the metabolic theory and the tissue-specific theory.
PXE International BioBank and Clinical Data Registry
With samples and clinical data numbering in the thousands, the PXE International Biobank is by far the largest collection for pseudoxanthoma elasticum (PXE) in the world. An easy application process allows researchers from all over the world access to these resources. And hundreds of research projects have used them.
Learn more about the PXE International BioBank and Clinical Data Registry
SEPTEMBER 15, 2007
By Emilie Lamb, Research Assistant, PXE International
With Sharon Terry, Executive Director, PXE International
The original paper was published in the Journal of Medical Genetics, October 2007, pages 621-628.
This summary first appeared in the Fall 2007 PXE MemberGram.
PXE International strives to connect people with other people with PXE, the research about PXE, and with our organization in order to provide the best possible care and services to those we represent. Here are several ways you can stay better connected with PXE International and all the services we provide to support you.
Clinical trials are structured research experiments used to advance medical knowledge and patient care. This means that there is a very clear and well-formulated process to test something that might be useful in treating a condition. Trials often investigate new treatments, interventions, therapies and approaches to a disease or symptom. They might also compare the effectiveness of different treatments, for example, does one drug relieve leg cramping more than another.
Pseudoxanthoma elasticum, PXE, is an inherited disorder that causes select elastic tissue in the body to become mineralized, that is, calcium and other minerals are deposited in the tissue. This can result in changes in the skin, eyes, cardiovascular system and gastrointestinal system. PXE was recognized over a hundred years ago. A number of significant advances have been made in the past few years.