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PXE Awareness

Volume 13, Issue 2. July 2007


President's Message


click to listen (434 KB)

 

Dear NAPE Friends,

 

This issue provides the response to a patient question which requires the physician and patient to consider many specific issues before agreeing to a treatment option. The initial question seems quite simple. Its answer reveals its underlying complexity. We encourage readers to focus on this issue (can a PXE patient take an aspirin each day to protect against heart attack?) as it represents the types of problems we PXE patients face. This is so important that Dr. Berthold Struk will focus on the difficult treatment decisions in PXE in his conference presentation at our meeting in Atlanta this September. PXE Awareness will carry the results of his discussion in the fall issue.

 

Nanotechnology, called by some “the science of the small,” relates a nano as a child’s marble compared in size to our planet. Nanomedicine offers the potential of much smaller amounts of medicine directed to treat specific diseased sites to obtain results with fewer side effects. Dr. Kattesh Katti will share with us in Atlanta his use of nanomedicine in cancer research and AMD. Dr. Chris Bergstrom is slated to update retina treatments and current research using stem cells in vision treatments.

 

We hope many of our Southern and Southeastern members will be present in Atlanta to learn and to question our speakers.

 

A recurring question for NAPE results from our stand on dietary intake of calcium. Our Board has voted to revisit this issue, to be the focus of NAPE’s winter issue of PXE Awareness. Contacts have been made with physicians and researchers around the country to obtain a wider understanding of calcium needs over all stages of life. We are seeking answers to questions about calcium absorption and its possible role in tissue calcification in PXE. New research will be presented as we try to give our readers information they with their physicians can use to determine their own calcium needs over time. If readers want to send us their questions and concerns about calcium, please do so right away so that we can seek expert response for the winter issue. We will begin to put that issue together on October 15 and thus need your input by September 30.

 

Finally, we remember Gerald F. Dwyer who passed away on June 5. Gerald’s family was instrumental in the very early development of NAPE. We are grateful for the many letters about Gerald and for the memorial donations made in his honor. Please remember Gerald and his family as they cope with his loss.

 

Fran Benham

 

 



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