-by Fran Benham

Karolyn Kells, PhD, RN, was NAPE’s first Denver Office Manager. Karolyn lives with PXE and wants to educate America’s nurses about the disorder and how it impacts life. As Professor of Nursing, Karolyn has been granted a year-long sabbatical during which she will survey PXE patients to determine how it impacts our lives and how we cope.

Patients at the Atlanta conference were invited to take part in a pre-survey evaluation of Karolyn’s planned questionnaire. Many volunteered and Karolyn is in the process of contacting some of them to review those things she and they believe are important for understanding among medical practitioners—especially nurses.

NAPE’s Board has authorized Karolyn to contact by telephone, at her own expense, NAPE members to invite them to take part in a telephone interview. Results will be made available to nursing journals. Karolyn will present her findings at next September’s annual conference which will begin on Friday evening with her report. We believe her findings will stimulate much discussion among members, physicians and scientists present. Should Karolyn telephone you, the NAPE Board hopes that you will respond to her questions, knowing that she understands and shares your concerns about living with PXE.