When I learned Monday morning from a mutual friend that Dr. Perry Rosenthal had passed away, it took my breath away. Something welled up in me and before I had time to think, it gushed out briefly onto my scleral lens Facebook group. Others joined in and shared what he has meant to them. I re-read my post later, and was mystefied to discover that I had written “Perry” this, “Perry” that, and “Perry” the other. I had always known and to the best of my recollection addressed him as Dr. Rosenthal. How on earth did “Perry” come out so naturally in that moment?
One question led to another. As I went through my workday, half my mind was running in another current, pondering the role Dr Rosenthal played in our dry eye world, what he represents to me, and why news of his passing came with such a resounding thud - despite the fact I'd barely had any contact with him in recent years. I wanted to put it into words and share it with you. If you are a dry eye patient (or doctor for that matter) I think it’s relevant regardless of whether you knew him. I won’t attempt any summary of his professional stature and imposing achievements (you can get a glimpse here http://www.bostoneyepain.org/our-founder/). I just want to tell you what Dr Rosenthal means to ME and why.
Dr Rosenthal epitomized patient centered care.He did this in a key way in an area of ophthalmology that sorely needed and needs it. How?
1. He listened to pain patients, and believed us, and what we described mattered to him.
Ophthalmologists as a class are focused on vision and the clinical signs of disease that could threaten vision. They are out of their depth in the worlds of pain and sensation. They don’t know how to gather, interpret or use pain data. They engage with what they see. Their world is driven by clinical signs. Symptoms (burning, grittiness, light sensitivity, etc) may start the conversation, and probably get noted in the chart, but decisions are made and results are assessed based on signs (TBUT, Schirmer, osmolarity, etc).
Dry eye patients, on the other hand, are entirely symptom driven. How their eyes feel drives them to the doctor, determines how compliant they will be with treatment, and takes them back to the doctor, again and again. Dry eye patients do not care about their test results if they can see and function comfortably.
As a result, the patients whose eyes feel worse than they look are underserved, and the more so the bigger the gap between the symptoms and the signs. They go from doctor to doctor, seeking relief, only to find that not only can no one really help them, but no one even takes their symptoms seriously - because they can’t see the reason for the symptoms.
THESE are the patients Dr Rosenthal became so interested in. He looked at them through fresh eyes. He listened. He believed that they were not exaggerating, not malingerers. For so many patients, he was the first who really took their pain problem seriously in its own right. And he went further:
2. He engaged intellectually with the things we patients told him.
He got curious, and started asking questions, when others weren’t.
Ophthalmology has a long history of paying, at best, lip-service to the problem of pain in dry eye patients at a theoretical level without truly engaging it in either clinical practice or research. There’s an unwritten law that clinical signs rule. Complaints are just… complaints, to be duly noted somewhere. Signs are data.
Dr Rosenthal, on the other hand, concerned himself with the reality and central importance of patients’ experiences as data that could and must lead to more knowledge, a better understanding of the pathophysiology of eye pain itself, and ultimately more successful treatments for a poorly served group of patients. To Dr Rosenthal, patient experience, i.e. pain, was key, not simply something thrown in as obligatory but confusing extraneous data.
3. He described and attempted to explain our experiences scientifically.
Dr Rosenthal took “the problem of pain” by the horns and began a wrestling match with it that would last the rest of his life. He listened, he watched, he studied, he theorized, he treated, he listened some more, watched some more, theorized some more, argued and fought, published “Pain without Stain” and went on to publish and even self-publish increasingly controversial papers and was criticized for getting ahead of the scientific evidence. And in his determination to get answers for us patients, he gained many friends in the patient community (in addition to all those he already had for his pioneering work with scleral lenses as founder of Boston Foundation for Sight), while at the same time galvanizing his colleagues to constantly dig deeper into the subject that consumed him.
While clinical practice has barely started changing, I want to point out how much change has occurred in the scientific community in the past ten years. (Dr. Rosenthal himself dates his most intense interest to an experience with a patient in 2007 - please see Bryn Nelson’s fabulous article).
TFOS' DEWS reports provide the perfect benchmark for progress. DEWS is the Dry Eye Workshop, an international medical consensus of experts reviewing the entire body of published dry eye medical literature and summarizing what we know.
The 2007 TFOS DEWS report, which was published as a badly needed dry eye bible at the time, does not contain the words “neuralgia” or “neuropathic”. The word “pain” occurs 21 times in the entire report including references.
What caused this new awareness and interest? Dr Rosenthal wasn’t among the authors, and I’m not suggesting it happened because of him. There are so many wonderful researchers who have done so much excellent work in dry eye pain and neuropathic eye pain. But to me, Dr Rosenthal, in the relentlessness of his pursuit of answers for us patients because of what WE were reporting, embodies the spirit of the best of it.
He gave corneal pain patients, with and without dry eye, hope. And language. And concepts and ideas. And he gave us confidence to voice our experiences and our needs more compellingly, which has given our issues greater visibility and created more momentum for more professionals to listen, think, observe, and study nerve function and pathways and how they may relate to pain and to treatment outcomes.
While we may have a long way yet to go for solutions, Dr Rosenthal ushered in an era of starting to ask the right questions. The ones patients care about.
There is something somewhere in the Proverbs about speaking up for those who have no voice, those who need an advocate. That's what Dr Rosenthal did through his work. In the world of dry eye, we patients may be a big demographic, yet we remain surprisingly voiceless as regards what questions should be asked and answered.
So to me, today, he is Perry, because it is the compassionate essential humanity undergirding his research and clinical work, that have defined him for me.
With deep gratitude