I was at a medical school in Johannesburg, South Africa when my courtship of Etta Fram began. Her father pioneered the development of radiology in South Africa and had an exquisite, exploring mind that thrived on problem solving, even if it was to repair the lawn mower or swimming pool filter, optimize the incubation of eggs to hatch the chicks and grow healthy birds, and of course explore the use of radiation for everything from cancers to varicose veins. Imagine growing up in this environment and to be told as a young girl “there is no place for women in medicine - indeed, they deprive a male of the access to the profession.”
Etta was expected to get a Bain Latin, Classics and History of Art, and an MA in Instructional Design and Technology Research in Education. Of course, she was expected to find a partner, have a family and produce grandchildren to give no end of pleasure to the grandparents. What a waste it would have been if she had joined the medical profession. But worse than that - her husband was offered a position in Ann Arbor, Michigan, so he dragged her away from her family and home. Then, when he was offered another position to develop a diabetes center in Norfolk, Virginia, she had just reached the pinnacle of utilizing computers in engineering and understanding their language - but still, she followed and supported her partner.
And what does this person say to me
when she puts her head down on the pillow
as we ready for sleep:
“You know, I really don’t feel fulfilled -
I could have been a doctor.”
One day we were reminiscing on the opportunities she could have had if her father had encouraged her to go into medicine, whereupon I confronted her with the challenge of tackling a nascent area of endeavor viz. health related quality of life research (QOL). Since 2000, she has designed three questionnaires related to neuropathy (Norfolk QOLDN), neuroendocrine tumors (Norfolk QOLNET) and fatigue (Norfolk QOLF). She steered this process through each phase of development and validation, from item selection, Delphi expert panels, patient feedback, focus group input and psychometric analyses for validity. These endeavors were avant-garde before their time and unlikely to reach the level of recognition required to achieve funding, but nonetheless, the discipline made it to the exalted tiers of NIH funding!
Etta has been the lead author of all three tools, has been invited to present them at national and international meetings, and lo and behold, the tools have been translated into 56 languages, copyrighted and licensed out to 20 institutions and industries, and are the gold standard as a detection tool, a diagnostic tool, and an evaluative tool in the clinic and in research programs. Her experience has provided her with a platform to mentor students and design research protocols and evaluate them. Working with the art students, she has embarked on the use of the tools in art therapy, promoting self-care and extending the embrace of medicine.
Etta has published seminal papers in neuropathy, NETS and fatigue. The neuropathy tool was used in Romania to examine 25,000 people with diabetes, and the questionnaire detected that 6,600 of these patients also had neuropathy, unbeknownst to their physicians or themselves.
She has authored the wonderful book Transcending Tradition: Quality Of Life As The Inextricable Link Between Activities Of Daily Living And Specific Organ And Disease States; another on The Art And Science Of Diabetes Self-Management And Falls Risk In Older People. Her chapter on diabetic neuropathy is regarded as the Bible on neuropathy by the American Association of Diabetes Educators.
And what does this person say to me when she puts her head down on the pillow as we ready for sleep: “You know, I really don’t feel fulfilled - I could have been a doctor.”