A Great Conversation With Kathleen Digre

Meagan Seay (MS): Today, we are here with Dr. Kathleen Digre. Kathleen is Professor of Ophthalmology and Neurology at the University of Utah Moran Eye Center, where she has worked her entire career.

Great Conversations Section Editors: Meagan D. Seay, DO Rachel Calix, MD A Great Conversation With Kathleen Digre Meagan D. Seay, DO, Rachel A. Calix, MD, Kathleen B. Digre, MD M eagan Seay (MS): Today, we are here with Dr. Kathleen Digre. Kathleen is Professor of Ophthalmology and Neurology at the University of Utah Moran Eye Center, where she has worked her entire career. Kathleen has been a formidable member of NANOS (North American NeuroOphthalmology Society) and an incredible advocate for her patients as evidenced by one of her recent online patient reviews stating, “My doctor walks on water.” We are excited to learn more about your life and career. Let’s start by having you tell us about where you were born and grew up. Kathleen Digre (KD): Well, thank you for inviting me to this great conversation. I grew up in Minneapolis, MN. My mother came from Southwestern Minnesota and so did my father, and my grandparents mostly came from Norway, so my parents were kind of first-generation Americans. My mother was a nurse until she had me, and then, she was a stay-at-home mom and then became the Chief Financial Officer for the company that my dad started, which was called Minneapolis Speaker Company or MISCO (Fig. 1). I spent my time in Minneapolis in the summers; I worked as a secretary at MISCO making money for college. Then, when the secretary came back from vacation, I went down into the production line and glued and soldered speakers together. So, I think I’m the only neuro-ophthalmologist that knows how to glue and solder a loud speaker together. MS: Where did you go to college? KD: I went to college at Augustana College. It was called Augustana College, now it’s Augustana University in Sioux Falls, South Dakota. It’s a Norwegian Lutheran college, liberal arts college, that we chose because it was far enough from home that I knew my parents couldn’t visit me all the time, but close enough that they were willing to help/support me to go to that school. During that college career, a couple of things happened that led me to medicine. The big thing that happened was between my freshman and sophomore year, Departments of Ophthalmology and Neurology (MDS, KBD), Moran Eye Center, University of Utah, Salt Lake City, Utah; and Departments of Ophthalmology and Neurology (RC), Ochsner Medical Center, New Orleans, Louisiana. M. D. Seay and K. B. Digre are supported in part by an Unrestricted Grant from Research to Prevent Blindness, New York, NY, to the Department of Ophthalmology & Visual Sciences, University of Utah. The authors report no conflicts of interest. Address correspondence to Meagan D. Seay, DO, Departments of Ophthalmology and Neurology, Moran Eye Center, University of Utah, 65 Mario Capecchi Drive, Salt Lake City, UT 84132; E-mail: [e-mail] 286 one of my best friends dove off the dock at my parents’ cabin and became quadriplegic. I changed schools to Augsburg College in Minneapolis to go through a whole journey of rehabilitation units and hospitalization. And when I went to Augsburg, I sat in on neuroanatomy lectures like mad, trying to figure out how we could heal a spinal cord. KD: Also, during that time, I was an English major. I had a literature course and a writing course, and I read an essay by C. P. Snow called Two Cultures, and I put it in the back of my brain. I thought, “Wow. People in the arts should be going to the sciences, and people in the sciences should go to the arts. Hmm. I wonder if I could do that?” But I went back to Augustana and finished my undergraduate degree in English and German, and then I was lucky enough to get a job in Germany. As a good English major, you want to have finishing school in Europe. So, I was able to get a job in Neuendettelsau Germany as the English teacher teaching Grades 5 through 13, and I lived in this little town and taught this school, and then I traveled during the holidays all around Germany and Europe with some friends of mine. KD: Then, after that I thought I was going to another kind of foreign country because it sort of was—the South. I went to the University of Arkansas in Fayetteville, and I thought I was going into the mountains, it was the Ozark Mountains. There, I got a Master’s degree in English literature, but I definitely came home after that experience. Then I got married and moved to Iowa, where I had been accepted into the PhD program in English Literature. But because I’d read that essay by C. P. Snow and because I was still interested in science, and partly because my husband, Michael Varner, was a OBGYN (obstetrics and gynecology) resident, I said, “Well, let me do pre-med and see if I can even do this.” KD: Also, I have an uncle, Vincent Hoversten, who was an internist at Marin County, who said, “Kathleen, I was an English major, too, so I know you can do this.” So, I did pre-med, and during that time I worked in Arthur Benton’s laboratory. Arthur Benton is a famous neuropsychologist who wrote a lot of different things about neurobehavior, neuropsychology, and I worked in his laboratory. I normed several of the tests that he has out, and I got to be involved in a research project on electroconvulsive therapy (ECT), looking at neuropsychological testing. If you get a left-sided ECT or a right-sided ECT or a both-side ECT, what kinds of deficits you would have. So, I spent a year and a half working in his laboratory until after my second try, I did get into medical school. So, I went to medical school at the University of Iowa, in Iowa City. Seay et al: J Neuro-Ophthalmol 2023; 43: 286-293 Copyright © North American Neuro-Ophthalmology Society. Unauthorized reproduction of this article is prohibited. Great Conversations FIG. 1. My family 1962: Mother Bernice, brother Rolland, brother Dan, Father Clifford, me. KD: At Iowa, one of my mentors who got me interested in neurology was Harold Adams. He’s a very dynamic neurologist who made neurology fun. The other thing I loved about neurology was it was just like explication of stories and I was kind of good at explication of stories because I was an English major, I could read a book and explicate the major themes. I played around with dermatology for a while thinking I might like that, but I went to the other end of the ectoderm and ended up in neurology, and I didn’t look at many other residency programs, however, because my husband was at Iowa. I went to interview at Iowa, and the Chair at the time, who is now deceased, said to me in the interview, he said, “Well, Kathy, can girls do neurology, too?” And “No,” I said, “but women can.” And I was the third woman into the neurology program at the University of Iowa. KD: During medical school, in the very end of medical school, I was fortunate enough to get to do a scholarship to Oxford, England. They had an exchange program where the Oxford student came to Iowa, and the Iowa student went to Oxford. And that was really exciting because I got to do neurology at the Radcliffe Infirmary. I saw iron lungs, and things were quite different. I studied under Dr. Bryan Matthews and Dr. RG Will. Bryan Matthews was a famous neurologist, and RG Will was also a famous neurologist interested in Jakob Creutzfeldt disease. But what got me into neuro-ophthalmology was James Corbett. James Corbett was the neurologist in my residency program, and he is kind of like a pied piper, if he catches you, you just follow him. He had me working on a project on pseudotumor cerebri in pregnancy. And it was a wonderful experience to get to work with James and Dr. Harold Adams and then all the rest of the wonderful faculty at the University of Iowa, including Hanna Damasio, who was interested in headache. KD: I kind of was torn between doing neuroophthalmology and neurobehavior because I really liked neurobehavior because it was close to neuropsychology. But I went to Stan Thompson’s farm, and there was Peter Savino, Stan Thompson, and James Corbett talking neuroophthalmology, and by the end of the evening, I was like, Seay et al: J Neuro-Ophthalmol 2023; 43: 286-293 “Sign me up. If these are the people I get to work with the rest of my life, that’s a dream position for me.” So, that’s how I got into neuro-ophthalmology. I knew no ophthalmology at all when I started. My fellowship ended up being 2 years, and I was just lucky enough to be with these people. They had a program to teach people like me some ophthalmology, like the first-year ophthalmology residents. I got to be a fellow with Chuck Maxner, who’s now at Halifax, at the Dalhousie University, and the late Dan Jacobson, who ended up at the Marshfield Clinic, and Jane Durcan, who became a partner of mine at the University of Utah. KD: And during this time, I worked closely with Randy Kardon, one of our good buddies in neuro-ophthalmology. Byron Lam was a medical student when I was there. Mei-Qi Jiang was also a fellow, and Patty Johnston (McNussen) was one of my junior residents who I got to work with and who also went into neuro-ophthalmology. So, I was really steeped in neuro-ophthalmology at the University of Iowa (Fig. 2). MS: Do you remember any highlights, clinical pearls, or anything that stands out from fellowship? KD: Oh, yes. The fellowship was rich. First, we had rounds in ophthalmology almost every morning from 8:00 to 9:00. Then, we’d go to neuro-ophthalmology rounds where we’d sit around in the clinic. The clinic was one big room, and we just had plastic dividers, just little dividers between the room. You could always hear what was happening in the next room. In the morning, we would talk about the patients we’d seen the night before, the day before. We kept a book with a list of all the patients seen, which helped us when we wanted to do a project. It meant that we had to go through all the books from years past to find people with that diagnosis. There was no computerized anything, hardly, at that time (Fig. 3). KD: I picked up many habits from my mentor. Stan Thompson carried little red fuzzy balls with him wherever he went. From that time forward, for all my fellows since, they all learn how to use red fuzzy balls to test visual fields. At the end of clinic, we would go downstairs and either have a cup of coffee or a cup of tea and talk neuro-ophthalmology pathways, and Stan loved to draw out things. He would take napkins and draw some pathway. This was golden because sometimes it was hard to find this in a textbook because we had journals and we had textbooks, but sometimes things were hard to find. I would save some of those napkins to look at those pathways since. MS: Do you still have some of those? KD: You know, I did, but I think in the moves from various offices, I’ve lost them. But it would be fun to look at them because they were always really instructive. Then, sometimes on a Friday afternoon, after clinic, we’d go to Stan’s office and he’d have a bottle of sherry in his bottom drawer and we’d all have a glass of sherry and talk about the week. KD: The other thing, during both years of fellowship, they didn’t have enough money to pay us a full salary. So, I worked in the neurology clinic to earn some of my salary, and I did the headache clinic. I got to do the headache clinic then with Jim Corbett who did headache, and Hannah 287 Copyright © North American Neuro-Ophthalmology Society. Unauthorized reproduction of this article is prohibited. Great Conversations FIG. 2. The fellowship year: Kathleen Digre, Jane Durcan, Chuck Maxner, Stan Thompson, James Corbett, Dan Jacobson, Meiqui Chang. Damasio. So, I really got double-trained during those 2 years in headache and in neuro-ophthalmology. Since then, that’s been one of my loves. I think there’s such an intertwining piece between those two. KD: One of my projects during fellowship, which was also kind of interesting, was trying to look at the fundus and do fluorescein angiograms and look at the MRs on women with severe preeclampsia and eclampsia. We reported one of the very first cases of posterior reversible encephalopathy syndrome (PRES) with severe preeclampsia, and that kind of stoked an interest of mine in pregnancy and neuroophthalmology (1). And of course, because of my husband, Michael Varner, who’s a high-risk OB (obstetrician), kind of dovetailed together, so he had an interest a little bit in neurology to go along with my interest in pregnancy and neuro-ophthalmology. Rachel Calix (RC): How wonderful. There are so many interesting connections. All of these people just seemed to be in your life to tie up your interests. KD: Well, is not that the way it is? It’s the people you meet along the way that kind of guide your journey, in some ways. While I was in Iowa, we were considering staying at the University of Iowa; however, we were both recruited to the University of Utah. My husband and I were both recruited simultaneously. The chair in neurology said, “Well, what does your husband do?” and the chair in OB said, “Well, what’s your wife doing these days?” and so we came out and interviewed at the University of Utah. And they didn’t even take me up to the mountains. I just liked the people there. Dick Baringer, who was the Chair of Neurology, was very engaging and had a can-do attitude of, “Whatever you want, let’s try to build it.” And John Greenlee studied paraneoplastic disorders, and he and I actually shared a case that I had of opsoclonus that was at the University of Iowa. And I called up Dr. Greenlee, who actually studied this woman’s blood and he found “antiPurkinje cell antibodies” or anti Yo; I wrote up this case (2). KD: Utah has been a great place. There were not very many faculty members in neurology. There were just a few 288 of us when we first started. But my job was to build a neuro-ophthalmology service, and I said, “Well, if I do that, can I build up a headache service, too?” And they said, “Well, if you want to.” But I said, “Yes, I want to. I think that it’s really needed here.” So, that’s what I did. I started neuro-ophthalmology and headache in about 1987, and I’ve been here ever since. RC: You’re also involved in the Center of Excellence in Women’s Health. How did that come to be? KD: Well, we started a fellowship in neuro-ophthalmology and then I started a fellowship in headache medicine. My husband then came to me, oh, gosh, 10 or 15 years ago, and said, “We’re trying to start a center of excellence in women’s health. You look at increased intracranial pressure, which is a woman’s disorder. You kind of have an interest in this area and you know people at the University of Utah, and you’ve got slightly gray hair so you can organize things.” [chuckle] KD: “Would you be willing to set up and help with a demonstration project through a project with the Department of Health and Human Services?” I said, “Well, okay, I can do that.” So, I cut back a little bit on clinic in neuroophthalmology, and then I started this. We got several grants along the way in women’s health, and the center is still ongoing. We sponsor clinical research conference and meet once a month, where we highlight clinical research and we try to stress sex and gender differences. We started a journal called the Utah Women’s Health Review. It’s a free, online, peer-reviewed journal. We’re still hosting an annual sex and gender conference at the University of Utah. I’m still involved in that. It’s like my third job in addition to headache and neuro-ophthalmology. MS: Tell us about when you had your kids and how that played into your work as well. KD: Yeah. So, well, of course, being married to a high-risk OB, it was very embarrassing to have an unplanned pregnancy of uncertain duration and not even knowing FIG. 3. Morning rounds at the University of Iowa: James Corbett, Kathleen Digre, Dan Jacobson, Stan Thompson. Seay et al: J Neuro-Ophthalmol 2023; 43: 286-293 Copyright © North American Neuro-Ophthalmology Society. Unauthorized reproduction of this article is prohibited. Great Conversations when or how . I understood how it happened, but I didn’t understand when it happened. So, my first child, a wonderful, wonderful girl who’s now an Associate Professor at the Colorado Mesa University, Johanna Varner, came along. And that was during residency and imagine, okay, so they take a woman resident and then she gets pregnant in the third year of her residency, so they had to deal with it. And when I couldn’t walk after my 2 weeks off that I was given for having this baby, I called up my program director and said, “You know what, I can’t walk. I literally cannot walk; I can’t walk a block.” And he said, “Well, you can have another week,” so I took a third week off. Well, that was my first pregnancy, which, I don’t recommend that at all. That is really not a good idea because it’s not easy, first of all, having a kid in residency, but not taking time off is not a good idea. KD: My second one happened in fellowship, which was much more lenient. I got 6 weeks off to do that. One thing that happened to me in pregnancy, I got even more energy than I normally have, and I wrote all these abstracts, and so I had 3 abstracts in New York City at the Academy of Neurology, and I just had a baby. So, my nanny, who was my sister, came with me and we took the baby to New York City and went to all my posters carting around a 3 or 4 month old. KD: So anyway. I had my 2 kids, and when we moved to Utah, we had nannies the whole time they were growing up until the year of my sabbatical in 2000, when I did an ELAM (Executive Leadership in Academic Medicine) fellowship, and I took a year of sabbatical, wrote a book, Practical Viewing of the Optic Disc (3) with Jim Corbett, and then I was the kids’ last nanny. I drove them to school, picked them up from school, and I would not say a word; I just listened to the kids talk in the back seat because . It’s amazing, kids don’t even know that you’re listening in. But that was a wonderful year. One of my messages to everybody is, take a sabbatical in your career because it really is a kick start. I learned PowerPoint, I got some educational tools, and it ended up being the nidus for NOVEL, the Neuro-Ophthalmology Virtual Education Library. MS: I know you’ve also talked about being your kids’ classroom mother. Tell us about how you made time for that and what that experience was like. KD: I got great advice from a neuroradiologist named Wendy Smoker who said to me, “Kathleen, the time is so short, how can you not be the kids’ room mother?” So, what I did was I partnered with another mother in every class, and I went on as many trips as I could, if I could schedule them on days I didn’t have clinic, I just said I was out, and then I always tried to bring in brains, I had some demonstration brains, so that the kids would see a brain and know about the brain. My kids, even today, think I was a room mother all the time, although I didn’t go on every single trip, I did do it, and I just made time for it because the time goes so fast and it’s one of the most important things to do. RC: That’s so impressive. Can you tell us more about either the challenges or how you approached balancing Seay et al: J Neuro-Ophthalmol 2023; 43: 286-293 working and having a family with both you and your husband being physicians? KD: Yeah, it is a challenge, but what I did was I hired out everything I could. I had a housekeeper who did the cleaning, and she did some of the laundry. I had a dry-cleaning service that came and picked up my husband’s shirts and ironed them and got them looking nice. I had a milk person deliver milk twice a week. I also had an ice cream truck deliver ice cream sandwiches so that I could be the house where all the kids wanted to come, and they did that about once a month, and they also had other kinds of nutritious frozen meals that I would put in the freezer. Also, we had a live-in nanny from the time the kids were basically born until I was the last nanny when my older daughter started driving, and then I carpooled with the neighbors as much as possible. KD: At dinner time, we ate together. We went on vacations together; we often took the kids when they were little to the beach. And when they got older and they wanted to watch television at the beach, forget it, then we did trips. We would take them on trips. But having time with family was really important. And then, our extended family, of course, is still in Minnesota, so we were in Minnesota over Christmas every year, as often as we could be, to see Michael’s parents and my parents and my siblings, et cetera. Family was a priority, and I remember, although, a few times when I was so frustrated, I’d think, “You know what, I’m going to just do the best I can, and that’s all I can do because I feel like I’ve got so many balls in the air.” And I made rules for myself. One of the rules was to travel no more than once a month, no evening meetings more than once a week, period. I just made these rules, and then I try to stick by those rules because otherwise, you could just be gone all the time or have other things all the time. So, I just made as many rules for myself as possible to keep ourselves kind of in balance. KD: And then time for papers and writing and research and all that was at night after the kids went to bed. That’s when I did that, or on weekends. I would carve out some time to do them. But it’s a juggling act, I have to say. And as the kids got older, of course, they were not interested as much in spending time with us, they had other interests. So, I had more time to work on my things. RC: That’s so impressive, I feel like you must be a person with boundless energy [chuckle]. KD: Well, I have one other piece of advice, and that is make sure you marry the right person, because . I’m not kidding you, my dad once said, “The most important decision you’ll ever make in your life is who you marry,” and oh, my goodness, am I am lucky that I had somebody who was supportive of my career, who was just as invested in me as he was in himself. He was willing to do stuff for the kids if I was busy and I would do stuff for the kids when he was busy. When we were on service, we’d kind of cover for each other. I was really lucky. We had 2 children, Johanna Varner, who is now Associate Professor at the Colorado Mesa University, and Gita Varner, who is the queen of COVID 289 Copyright © North American Neuro-Ophthalmology Society. Unauthorized reproduction of this article is prohibited. Great Conversations at a private school here in Salt Lake that caters to pre-K through 12th grade, she has organized their entire COVID response keeping their school safe (Fig. 4). RC: Wow. KD: So, I’m really proud of our 2 daughters who are amazing. RC: Well, in addition to that, you spent time as president of both the American Headache Society and the North American Neuro-Ophthalmology Society. Tell us a little bit about your involvement in these organizations and your presidencies. KD: Yeah. Well, those are real highlights to me. I feel like that I was given those opportunities, and they kind of came because of Bob Daroff and Todd Troost. Both of these guys were very instrumental in my career, and they recommended me to be on publications committees both for the Journal of Neuro-Ophthalmology (JNO) and for the journal Headache. I got involved early in just being the publications chair, and I learned about contracting and editors and helping editorial budgets and editorial things. These 2 guys were just amazing people. They were very supportive of my career, and they’re both headache neuro-ophthalmologists, by the way. They both were involved, and especially Bob Daroff, who was a past president of the American Headache Society. But Todd was really such an encouraging guy. And then, other people in NANOS were very encouraging to me, too: Jack Selhorst, Neil Miller, Tom Carlow just sort of really encouraged me. I started on the board of NANOS, I think, in 1994. I think I was a treasurer once and I did something else, but I was on the board, and then I became the president-elect in 2000 when Neil Miller was president, and he was the chair of the board when I became president in 2002–2004. KD: It was a great honor to serve. I was NANOS’s first woman president, and we were a much smaller society then. We could fit into Snowbird here in Utah. But we had a few challenges during my presidency. We had to change our management organization. For many years, Tom and Susan Carlow ran our organization, and then we switched to a management organization, and then we had to switch from that one that we had hired to a new one that is the current FIG. 4. Our family: Michael Varner (my husband), Kathleen Digre, Aiden Walla (son of Tom Walla) Johanna Varner, Tom Walla (Johanna’s husband), Annika Walla (daughter of Tom Walla), Gita Varner. 290 one that we have today, due to various reasons. And that was a big deal because it just meant changing the way we did business a little bit. KD: Also, during that year, we really developed some strategic plans. We had a strategic planning meeting, I remember, at Snowbird, that we set up some of the same strategic plans that are even ongoing now. It was really a wonderful experience (Fig. 5). Then, I got to be chair of the board of NANOS after that, and then I rotated off, but I’ve been involved in NANOS ever since, in nominations committee, and AAO (American Academy of Ophthalmology) committee, and of course, running NOVEL and working with the curriculum development for NANOS. MS: I’d like to go more into NOVEL. Can you tell us about the very beginnings of that and how that progressed? KD: NOVEL really started as a partnership. I was working on my book Practical Viewing of the Optic Disc, and I went to Nancy Lombardo, and I said, “I’ve got all these slides and I want to get these into a CD. I’m writing a book, and I want the CD to come with the book.” This was early days of computer, not the fancy stuff we have now. Anyway, Nancy and her team started looking at the stuff and said, “Wow, this stuff is really great. You’ve got optic nerves and cool pictures.” And I said, “Yeah. Well, neuro-ophthalmology is really great.” I shared with her some of the videos that Dan Jacobson and I had done during fellowship. I would run around and find all the tapes and key them up, and Dan would go to his recording studio at the University of Iowa and record a discussion about what was going on in the tape. So, he and I together jointly made these tapes, so I showed her that, and she said, “You know, we could write a grant to the National Library of Medicine to start a collection of neuro-ophthalmology.” KD: We had to come up with a title, and both of us came up with the same title. I said to her, “Nancy, I’ve got the perfect title,” she said, “Kathleen, I have the perfect title.” Well, it ended up being the same title, the Neuro-Ophthalmology Virtual Education Library or NOVEL (4), and so that was the start of it. I went to Bill Hoyt who was retiring, and I said, “You know, we’ve got this idea that we’d like to put your whole collection of optic disc photos into a library of neuro-ophthalmology,” and he said, “That’s a great idea.” Then, I went to Shirley Wray and said, “I know you’ve got all these videos,” and she had permission from every single patient to publish their videos, so we started putting these together. Bill Hoyt was so generous. He would fly to Utah, I’d pick him up from the airport on Thursday evening, and he would stay at my house, and we’d sit outside, and I have hummingbird feeders everywhere and he watched the hummingbirds, and we’d have a little glass of wine and dinner. I’d get him to rounds in the morning in neuro-ophthalmology, and then I’d take him over to the library, and he would work for the whole day at the library. Then, I would get him back to the airport and he’d fly back to San Francisco that evening (Fig. 6). KD: But that’s how his collection got developed. He just brought slides, and every single slide he did the meta-data Seay et al: J Neuro-Ophthalmol 2023; 43: 286-293 Copyright © North American Neuro-Ophthalmology Society. Unauthorized reproduction of this article is prohibited. Great Conversations with Nancy Lombardo working at the computer. Then, Shirley Wray worked with Nancy to put all the videos up. And the first prototype of the website was in 2004, it was pretty rudimentary, but as you know, it’s really developed over time, and thanks to Nancy Lombardo and the crew at Eccles Health Sciences Library at the University of Utah, we were able to develop a memorandum of understanding with Eccles at the University of Utah and with NANOS. So, it was a joint project, and as you know, it’s gone gangbusters ever since. MS: How many items do we have now? Like tens of thousands? KD: Yeah, like way more than 10,000 items. It’s free and open to the world; that’s the best part of it. The number of NANOS members contributing and being involved in NOVEL and then the products that have come out of NOVEL is really amazing. It’s like 70 of our members volunteer to be a part of the NOVEL committee, the curriculum committee, and the editorial board. It’s really a cool project. RC: Looking back through your career, is there anything that happened, roads you went down, that were surprising to you? KD: Yes. Oh, of course. It’s a journey; we’re always on a journey. I was a little surprised that I was invited to get involved at the American Headache Society, because I did headache, but I wasn’t like a super duper researcher in headache. But, I love doing headache and neuro-ophthalmology. I cannot imagine practicing neuro-ophthalmology without headache background and vice versa. I can’t imagine practicing headache if you didn’t know neuro-ophthalmology. It’s been a wonderful journey. Being president of the American Headache Society was really a great honor, and I made some contributions I think that were good to that group, too. I had several philosophies about opening it up to a lot of people, and because of that warm feeling in NANOS, I wanted to make sure that headache could have that same wonderful collegial feeling. FIG. 5. Strategic planning at Snowbird with the NANOS board 2003. NANOS, North American Neuro-Ophthalmology Society. Seay et al: J Neuro-Ophthalmol 2023; 43: 286-293 KD: Anyway, that was one surprise, but another surprise was while I was at a EUNOS (European NeuroOphthalmology Society) meeting in Oxford, England, and Klara Landau came up to me and she said, “Kathleen, I need you to come to Switzerland for 6 months and work on promoting women in academic medicine.” And I went, “What?” She said, “Can you come like this fall?” And I’m going, “Oh, my goodness. No way, because I’ve got stuff going on.” But I made it work out and went from January through the end of July of 2014. I got to be the first Hedi Fritz-Niggli Gastprofessorin. My job description was I was supposed to promote women in academic medicine and help people along the way. KD: So, it was one of the most exciting 6 months in my life, living in Zurich, Switzerland. I got to work in Klara Landau’s department. I worked with residents every week and presented journal articles in her department. I went to the clinic. I learned different ways of doing things. And she had a wonderful, wonderful department of really wonderful people who were very generous with themselves and their time. I got to work with one of their medical students who joined up with one of the medical students at the University of Iowa, and we wrote a paper on eye pain in ophthalmology and neurology clinics in Zurich and then at the University of Utah (5). I got to work with a lot of junior faculty. It was really a wonderful experience. I worked with the whole university in promoting women and women’s advancement. I hosted a bunch of seminars and workshops that were really fun. It was like another shot in the arm of more energy when I came back, of applying all the things that I had gotten to learn about, et cetera, when I came back. KD: So, that was really a surprise that I would have never expected, but it was a great experience, and one of the highlights of my whole life, really. I would say the other surprise was realizing that my clinic was like a laboratory. My patients would come in with the weirdest complaints, and then I had to figure out what the heck was going on. And early in my career, I met a guy who was a radio announcer, and he was blind, but he had such severe light sensitivity that he was wearing baseball hat and sunglasses and I went, “Oh, my goodness, why could he have light sensitivity?” And he was a straight-shooting guy. Why could he be light sensitive? And it sort of started a journey that my mentor said, “Kathleen, you really don’t want to get into photophobia, do you? Because that’s like a crazy diagnosis.” And I said, “Well, there’s got to be a basis for it.” KD: And so, for the past 20 years, I’ve been really interested in this subject, and when I heard about melanopsin cells or intrinsically photosensitive retinal ganglion cells, I went, “That’s got to be a piece of the puzzle.” And I was fortunate enough to cross paths with Dr. Rami Burstein, and I talked to him about this topic. I actually went out and did a grand rounds on clinical aspects of photophobia, and I said, “I’ve got patients that have retinal dystrophy, retinitis pigmentosa that are terribly light sensitive.” And so, he 291 Copyright © North American Neuro-Ophthalmology Society. Unauthorized reproduction of this article is prohibited. Great Conversations FIG. 6. Nancy Lombardo, William (Bill) Hoyt, Kathleen Digre working on The Hoyt Collection for NOVEL. came out and interviewed these people, and it resulted in a wonderful paper (6), bringing that clinical aspect in with basic science research because he’s a genius at basic science research in headache medicine and in some of the phenomenon that accompany migraine, for example, photophobia. So, it’s a surprise that I never would have expected to be involved in this topic. I was kind of a pseudotumor cerebri team member, and I still am, but then I got involved in this line of thinking. MS: As you were saying, for better or worse, photophobia is one of your passions. Can you tell us more about specific patient encounters? I know you’ve changed several patients’ lives because you know so much about photophobia. Can you tell us about that? KD: Well, the first advice I have is, number one, this is a neuro-ophthalmic problem, and that you have to have an approach to it, just like we have an approach to double vision, an approach to anisocoria, approach to anything, which, you have to have an approach. And so, in this, my patients have really taught me that you must pay attention to what the bottom-line cause is, and you have to have an organized approach. My approach is, of course, to take a detailed history and then a detailed examination, paying attention to the cornea. Does the photophobia get better with an anesthetic drop? Do they have the signs of retinal disease? Do they have blepharospasm? And finally, do they have migraine? (7). KD: And it’s not that difficult, but a neuroophthalmologist is really the person who makes the diagnosis. My patients have taught me that a lot of people do have anxiety and depression that’s comorbid. Just like any disease has comorbidities, they have this comorbidity, and sometimes that can get in the way of people wanting to take care of these people because they can be kind of needy. But it’s so rewarding to see people get better. And here, again, it was headache, understanding some of the headache literature that helped me understand a treatment. There was a wonderful article back in the late ’80s, early ’90s, about using a special lens called FL-41, and these 2 scientists in England came up with this, tried it out in kids with migraine, and 292 found it worked (8,9). And so, we tried it out with not just migraine, but with blepharospasm, and found that this could be a treatment to help people’s light sensitivity that accompany blepharospasm. KD: I think that our patients teach us so much. Another patient I had that got me on the route of thinking about photophobia, sometimes as a reflex sympathetic dystrophy or complex regional pain syndrome, was a lady who had some cornea problems and then she started having horrible, horrible, light sensitivity, and then she started having eye closure apraxia and blepharospasm. And I asked the question, “Could this be a form of reflex sympathetic dystrophy (or complex regional pain syndrome)?” So, we did a sympathetic block in her, and it absolutely stopped her problem, and so, we introduced that many years ago in our studies (10). But our patients really do teach us so much that we can be grateful that it’s like our own laboratory is there. MS: I’ve seen some of the letters that you get from people around the country and world reaching out to you about their photophobia. So, it’s very evident how wellknown and good you are with treating patients with photophobia. KD: Well, I’m trying to deputize all neuroophthalmologists, that’s my one of my career goals, is to deputize the rest of neuro-ophthalmology to become good at it and not be afraid of these patients because we can really make a difference. MS: Is there anything you would go back and change if you could? KD: Well, maybe getting into medicine earlier would have been good. But you know what? I use my English background all the time. It helps me write, it helps me speak, it helps me interpret people’s stories, so I don’t think I’d change anything. I wish my friend didn’t have that accident, but he really got me interested in neuroscience, for sure. And maybe I would have tried to get to more kid stuff along the way, although I did the best I could to get to as much kid stuff as I could. Those would be the only things I can think of changing. RC: Well, of all your considerable number of successes, what would you say you have the most pride in throughout your career? KD: Well, I’ve loved being a mentor and teacher and promoter of people. I write a lot of letters of support for people to get advancement, and I think that’s a great joy to do that. But I think the NOVEL project and neuroophthalmology has been one of my life’s work, and it will continue to be a life’s work probably the rest of my life because I think it’s such a good example of how to share knowledge with the world in this day of electronic communication. The other thing I’m proud of is that I’m successfully still married, [chuckle] and I have 2 wonderful daughters that I get to be a mom of 2 adult children. My family has been a wonderful joy to me. And last but not Seay et al: J Neuro-Ophthalmol 2023; 43: 286-293 Copyright © North American Neuro-Ophthalmology Society. Unauthorized reproduction of this article is prohibited. Great Conversations least, I would say, I am so lucky to get to work with my colleagues, Judith Warner, Bradley Katz, Meagan Seay, Alison Crum, Irina Krikova (Fig. 7). I mean, I am just blessed, because I get to go to work with wonderful people every day. And what better way to get to spend your life with people who can energize you and continue to make a difference for so many people in the world. RC: Absolutely. RC: So, there can’t be much free time, but what are you doing in your free time? KD: Well, I belong to a book club. So, I read a book every month for book club, and I like to pick classics. This last year, I had them read Louisa May Alcott’s Behind a Mask or the Will of a Woman, which nobody would believe that Louisa May Alcott would write. I enjoy doing that. We have a cabin in the mountains, so we go there a lot and get to do some hiking and just spending time close to a mountain stream. I like to fish and go on canoe trips. I like to travel with my husband. We like to go on trips with our daughters. And so, no, I do have some free time. I do walk 10,000 steps, or at least I try to every day, and I have a Fitbit on me. So, it’s important that I get my steps every day. RC: How do you try to get ophthalmology and neurology residents to go into neuro-ophthalmology? KD: Well, so I’ve been fortunate enough to teach in the neurology course for the second-year medical students for more than 30 years. And they love neuro-ophthalmology because it makes sense, and all the pathways makes sense. It’s fun to do that; it’s fun for them to have their eyes open up if they can get into clinic. They have to spend time, although, otherwise, it can be easily overwhelmed by the numerous complaints and the complexities of the people we see. And I’m always looking for our ophthalmology residents to go into neuro-ophthalmology, and we’ve been successful at FIG. 7. The Neuro-ophthalmology Crew at the Moran Eye Center, University of Utah: Alison Crum, Brad Katz, Judith Warner, Kathleen Digre, Don Creel, Meagan Seay. Seay et al: J Neuro-Ophthalmol 2023; 43: 286-293 getting at least one over the years to go into neuroophthalmology. And neurology residents, we’ve had a couple that have come into neuro-ophthalmology, which is very good. KD: But I wish I had some magic pixie dust that would inoculate people, too, because this is the best specialty of the world. I mean, it’s the best club in the world. Where can you go to any city and meet a neuro-ophthalmologist and you’re instantly part of the neuro-ophthalmology family? And they’re all over the world, and they love being together and learning and sharing and collaborating and cooperating. So, neuro-ophthalmology is the best specialty in the world, along with headache medicine, of course. RC: What advice do you have for neuroophthalmologists who are early in their careers? KD: Find areas of your passion. Think of your clinic as your laboratory because the questions that are not answered for those patients are ones that we need to find answers for. And stay excited. Find an area of neuro-ophthalmology that really speaks to you, gets you excited about reading and learning, and continuously thinking about stuff. So, I would say finding that passion is what you want to do, and then go with it. RC: Thank you for sharing your life and your career and all of the insights. I feel like this is just one of the most valuable conversations we’ve had. KD: Oh. Well, thank you! MS: I think your patient was right, that you do walk on water! KD: [chuckle] I don’t think so. I think that I’d sink like a rock. [chuckle] MS: Thanks so much! REFERENCES 1. Crawford S, Varner MW, Digre KB, Servais G, Corbett JJ. Cranial magnetic resonance imaging in eclampsia. Obstet Gynecol. 1987;70:474–477. 2. Digre KB. Opsoclonus in adults. Report of three cases and review of literature. 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