Tributes to a Passionate NPH Physician Advocate — The Passing of Harold O. Conn, MD

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dr. harold conn

Harold O. Conn, MD was a world-famous doctor specializing in diseases of the liver.  After his retirement he developed Normal Pressure Hydrocephalus (NPH) and thus embarked on his second career which was to study and spread awareness of this condition.  His perspective was unique and informed, and his work was generous and insightful.  In this article HA board member Marvin Sussman, PhD and Carlos Hakim, PhD pay tribute to Dr. Conn and his work.


Tribute to a Passionate NPH Physician Advocate — The Passing of Harold O. Conn, MD

By Marvin Sussman, PhD

Harold O. Conn, MD, a world renowned liver specialist (Hepatologist), author and a pioneer in the basic understanding and treatment of advanced liver disease, died on Oct. 9, 2011 of natural causes at age 85 in Pompano Beach, FL.  Dr. Conn was a physician and 50-year faculty member at the Yale University School of Medicine.  He wrote more than 400 peer-reviewed articles for national medical publications about hepatic encephalopathy, detailing lethal liver diseases.  His unique sense of humor made these articles more enjoyable.

Dr. Conn earned BS (1946) and MD (1950) degrees from the University of Michigan and interned at the Johns Hopkins Hospital in Baltimore.  He was the chief resident at Yale-New Haven Hospital, earning a two-year fellowship with Dr. Gerald Klatskin, a pioneering Hepatologist. Dr. Conn later established a liver unit at the West Haven Veterans Administration Hospital and worked closely with Dr. Klatskin for over 30 years. Today, more than 100 Klatskin or Conn trained Hepatologists are scattered throughout medical centers around the world.  One of his greatest professional accomplishments was “The Histopathology of the Liver” by Klatskin and Conn, published in 1995. This book, a benchmark reference for the diagnosis of chronic liver diseases, was Dr. Conn’s last big project until he was diagnosed with a condition that was unknown to him, normal pressure hydrocephalus (NPH).

Dr. Conn’s health began to fail shortly after his retirement; and he had difficulty walking. Over the next decade, with a misdiagnosis of Parkinson’s disease, he developed other symptoms, including loss of short-term memory and a decrease in responsiveness, reaction time, and mental sharpness. A second opinion by a young neurologist in 2003 revealed the correct diagnosis of NPH. A neurosurgeon drained 60 milliliters of cerebral spinal fluid, and his symptoms vanished. A shunt was implanted, and the symptoms were controlled.  At age 78, Dr. Conn passionately launched himself into a study of the disease, which was identified in 1965 by his friend, Salomon Hakim, M. D., Ph. D. He became an expert spokesperson for NPH awareness, publishing articles in medical journals and appearing on national radio and TV programs.  A YouTube presentation by Dr. Conn may be viewed at:

http://www.youtube.com/watch?v=XwzRBP86vZI

A 2008 paper in the Yale Journal of Biology and Medicine by Dr. Conn and Francis M. Lobo, M.D., demonstrated that a significant lack of awareness of NPH remained among physicians surveyed:

“What Do Physicians Know About Normal Pressure Hydrocephalus and When Did They Know It? A Survey of 284 Physicians”

Harold O. Conn, MD and Francis M. Lobo, MD

As a Good Samaritan, Dr. Conn enthusiastically made himself available to advise patients and the families of friends about the diagnosis and treatment of the condition.  In the ensuing decade he wrote a dozen meaningful articles about NPH, its prevalence and heredity, and he also appeared on national radio and TV programs.


Personal Perspective on Harold O. Conn’s Interest in NPH

By Carlos Hakim, Ph. D

Harold Conn, M.D. contacted me by letter in December 2003.  This was a few months after his diagnosis of normal pressure hydrocephalus and the implantation of a shunt, resulting in his successful recovery from this disease. Coincidently, his winter home was in Pompano Beach, Florida, only five minutes away from my parent’s winter home. A month later, when my father, Salomon Hakim, M.D., Ph.D. was in Florida, the three of us got together. This was the beginning of what would become a warm and fruitful friendship during the next seven years. As Dr. Conn would frequently state, he was the newly adopted member of the Hakim family and their ongoing research program.

Dr. Conn’s interest in NPH grew tremendously, to the extent that he gave up his specialty of hepatology (liver disease) and devoted his new career as an amateur “NPHologist”. His two new primary goals in his life surrounded NPH. First, he wanted to learn everything he could about NPH. Second, he wanted to make as many practicing physicians as possible aware that NPH is not a rare disease and that in most patients it is reversible, even when it is in its terminal stages.

Harold Conn was very impressed with Salomon Hakim’s description of NPH in 1964, which at that point was an unknown disease. He was captivated by the half-century of work produced by the Hakims and coworkers, including published articles and the creation of several implantable shunt-valves. These valves permitted precise and extrinsic control of the CSF-systemic shunt pressure, restoring virtual normal life to thousands of patients who would otherwise be disabled or deceased.

A very important aspect of Harold Conn’s contributions was the fact that his observations of NPH were from his perspective as a physician with the illness. When Salomon Hakim met Harold Conn in 2003, Dr. Hakim mentioned that Dr. Conn was the first physician with NPH that he had met, and that he thought his medical training would have given him different insights from a non-medically trained patient. Indeed, they did. As an experienced academic physician with a lot of free time, he saw the opportunity to study NPH, a poorly understood, and not fully accepted, but reversible illness and he accepted the challenge.

Even though Dr. Conn learned that some experts doubt the existence of NPH and that the efficacy of shunting is questioned by many neurologists and neurosurgeons, he promptly abandoned his interest in the liver and dedicated his new life to making NPH a familiar term for physicians and lay people.  Additionally, he commented on the shunt complications that he experienced. He learned about NPH the hard way; he developed it.  Dr. Conn published several articles and lectured about NPH, including, among others:  “Normal Pressure Hydrocephalus: Case Report by a Physician who is the Patient with Observations of the Patient”.

At the time of his death, he was quite advanced in the process of writing a book on NPH and his experiences with it. Dr. Conn was also beginning to organize a symposium on NPH to commemorate the 50th anniversary of the initial description of the condition (March 10, 1964).

I greatly enjoyed the numerous meetings and discussions we had. He was an avid writer and his enthusiasm with this subject was clearly displayed in his accomplishments during the years he dedicated to NPH. A few months before his death, I mentioned to him that I greatly admired his dedication and stamina and he responded:

“After a decade of depressing diagnoses I didn’t immediately accept that I had this relatively new, mysterious, reversible illness until my neurosurgeon had performed a lumbar puncture that induced an instantaneous, miraculous, remission.  I had had difficulty climbing onto the gurney, but 10 minutes after the drainage of 60 ml of spinal fluid had started I could walk again.  It was such an immediate, dramatic change that I, as an objective scientist, who does not believe in casual miracles, did not believe that it could have occurred so rapidly.  As an objective observer I assure you that this miracle did occur.  Immediately after the CSF drainage I could again walk normally and felt and acted like my old self.  For the past seven years I have enjoyed every day the miraculous results of my shunt procedure”.

1 Comments for : Tributes to a Passionate NPH Physician Advocate — The Passing of Harold O. Conn, MD
    • Shelly sofaly
    • December 8, 2017
    Reply

    I also was misdiagnosed for 7 years- so yes more education needs to go on- and on!

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