Lytico-what … ? Lytico-Bodig is the Chamorro name for a devastating neurologic disease that has plagued many of the older Chamorro’s. Lytico means “paralysis”, and “Bodig” is dementia. This condition resembles two terrible neurologic diseases - ALS (Lou Gehrig’s Disease), which leads to paralysis, with patients eventually losing the ability to breathe, and thus suffocating. The other component (Bodig) is dementia, which closely resembles Parkinsons. Talk about a double whammy! This disease was first described by physicians after World War II. Epidemiologic studies showed that between 1940 and 1956, this was the leading cause of death on Guam! Studies ensued to determine the cause, including efforts from several physicians from my alma mater – Mayo Clinic. But to date, nobody has found the cause. Hypotheses includes a parasite which was killed off during WWII, or a neurotoxin that is found in certain seeds that were ground up and used for flour in baking (especially common during food shortages in war time). So far though, neither has been proven. Of note, there have not been any new cases in anybody born after 1957, so the disease itself is dying off (so don’t worry mom, I won’t get it).
So why was I involved in trying to solve the cause of this disease? In addition to affecting the brain, a certain retinal degeneration was noted in patients with Lytico-Bodig. It became known as “Guam Retinopathy.” A picture is attached for those interested. J Interestingly, most patients with Guam Retinopathy did not complain of poor vision, and indeed most had good vision. Another point of interest is that some patients noted with this disease of the eyes later went on to develop the neurologic symptoms – thus the eyes were the first clue to that person having the disease. The photos of this retinopathy were once shown to a famous retina specialist, who said they look exactly like another retina condition he has seen, which is caused by a parasite crawling around the retina. If you look at the photos, it does look as though a small critter meandered aimlessly around the back of the person’s eye, leaving behind its tracks.
Guam Retinopathy
Normal below (for comparison, courtesy of Karen's request)
Disregard difference in color. That's not pathologic.
So yesterday I was surprised (and honored) to receive a call from Dr. Steele, a famous neurologist who has been studying and looking for the cause of Lytico-Bodig for the past 40 years. He is retired, sort of. He has kept track of patients with this disease, and one of the original patients he described in a scientific publication passed away this last weekend. He had received permission to do an autopsy and send the patient’s eyes and brain for pathologic examination, and was hoping I could help enucleate the eyes (remove the eyes as a whole). I said yes, and thus found myself taking a step back in time, feeling as though I were a first-year med student all over again. It is a humbling, semi-reverent endeavor to be doing surgery on somebody who has passed away. There remains a high degree of respect for these individuals who have allowed us the privilege of learning and trying to solve a mystery which will hopefully help others in the future. And yet, when you embark on this type of procedure, you learn to detach yourself somewhat from what you are doing – focusing on the task at hand, rather than the person.
So tonight I was honored to become a part of a great many who, through the years, have played a role in trying to find the cause of this disease. Whether we find it or not, is not what is most important. It is the fact that we care about those affected, and continue to apply ourselves to searching for and trying to solve what has devastated their lives. This applies to broadly to all diseases, not just Lytico-Bodig. Some we are fortunate enough to be able to successfully identify and treat (such as cataracts), while others will never be solved in this life. I look forward to the day when we’ll no longer struggle against disease, and I’ll be able to learn from the Great Physician the solution to these medical mysteries, while knowing that they are forever history! Until then, there are plenty of common – and rare – conditions to keep me busy.
