Patient Voices in the New York Times: http://www.nytimes.com/interactive/2009/08/26/health/TE_NARCOLEPSY.html
“When I first met Dr. Rye, I was a nine year old in great need of a doctor who could effectively treat me for narcolepsy. I was out of school because no medications would put me to sleep or help me stay awake. With Dr. Rye's help, I was able to find the right medicines that worked and go back to school. Dr Rye wrote letters for me to establish my disability status. My parents knew that if there was a problem, we didn't have to wait for our next appointment; they could email him, and he would respond to them from wherever he was in the world. Without Dr. Rye's expertise and encouragement, I would not be where I am today. I graduated from high school in 2011 at the top of my class, and I am currently a sophomore at the University of Georgia with big plans for the future. There was a time when I couldn't even keep my eyes open. Thank you, Dr. Rye!!”
“Kevin: "Finding Dr. Rye helped me have a more regular life".
Regina Bayles (mother): “As a parent, it is sad to know your child has a sleep disorder; but it was scary to realize he had cataplexy as well, when he would laugh. At age 7, a sleep study was performed to determine his narcolepsy and cataplexy. Soon after this diagnoses, we found Dr.Rye and his staff to be most helpful in helping Kevin (and us) with this change in his life. At age 10, Kevin continues to be in his care and living life, awake and laughing. He is excelling at school near the top of his fourth grade class”.
For 13 years I have struggled with fainting and constant sleepiness, and the medications I was prescribed just seemed to make it worse. My aunt recommended I go to Emory to have further testing done and, within the first 5 minutes, I knew God had finally answer my prayers and placed the right doctors in my path. After the first hour they knew I had been misdiagnosed previously and they were determined to figure out what was wrong with me. The nurses and staff bent over backwards and took their time to find the right medication for me and really cared about me as a person. When I need refills and the entire state of Georgia was on a shortage, KK called every single pharmacy to locate one bottle of medicine just for me. When I was crying and upset that I would never be "normal" they were the ones who held my hand and looked me in the eye and told me they were going to make it happen. Let me just put it this way, when your own doctor is the one drawing your blood and running your labs himself, you know you're in the right place. Then came an even better blessing from God, Dr. Rye had a clinical trial that he really thought would help me out. A month into the clinical trial they knew the medicine was working. Two months on the medication and I was a brand new person. I was awake, I was happy, and best of all my health was perfect for the first time since I was eight years old. Now as a 22 year old, I am a college student, with a normal social life, something I could never have if it were not for Emory. To tell you this clinic and this staff is just another hospital would be a lie. These doctors have become a part of my family and were just as determined to see me healthy as if I were their own child. I am ever indebted to them for this discovering my proper diagnosis of Hypersomnia. It might not be a full cure, but if anyone can give you the hope and the care that a patient deserves it's Emory Sleep Center and their staff.
May 20, 2012
I am sharing my experience to ask you to consider making a generous gift to support the work of Dr. David Rye and his colleagues at Emory Medical Sleep Clinic. I am a grateful beneficiary of their cutting edge work on sleep
I have always had what I considered to be strange, but minor, sleep issues. Approximately 25 years ago, however, that changed. I was in my early thirties and the prime of my life. I was a husband and attentive father of three children, a busy pastor of a large congregation, and actively engaged in several hobbies. Then, something happened. I lost my energy. My mind seemed to fill with a "fog" that served as something like a "veil" between me and what was going on around me.
Of course, I consulted doctors. After a year or so, they concluded that I had contracted the Epstein-Barre virus, or perhaps Chronic Fatigue Syndrome. No helpful treatment was to be had. Family and close friends were convinced I had ministry burnout and advised me to do something else.
I am a slow learner. I did resign from public ministry, but I went to law school. What was I thinking? By the time I graduated I was a physical wreck. It was at that time that doctors started to focus on my sleep problems, but offered only treatments for Restless Legs Syndrome (RLS).
As several more years dragged by, I served as a law clerk for a federal judge and then began practice with a large, national law firm. Our clients were mostly Fortune 500 corporations throughout the United States so I traveled every week for about seven years. Frankly, I do not how I did it, except through sheer will-power. I continued to seek medical treatment, but without success. Finally, I left private practice to go in-house with a Fortune 200 company, thinking little or no travel would help me regain some stamina.
Like I said, I am a slow learner. The in-house job involved recruiting and hiring attorneys to build a new practice area and then managing it. After about two years, I was asked to move into general management and became a vice president, and then later became an executive vice president. The pace was grueling. The pressures relentless. The fog in my mind and the veil between me and the outside world grew thicker every year. The fatigue was debilitating. If I was not at work, I was asleep.
During this time, I saw doctors at three nationally-known medical clinics. The second clinic I saw diagnosed me as having "idiopathic central nervous system hyper somnolence" and prescribed a stimulant to help me wake up. The lead doctor also advised me to retire. The third clinic confirmed the diagnosis but had no other treatment to offer. Finally, in 2010, my personal physician advised me to retire because he believed my general health was on the verge of a major deterioration.
I retired in early 2011 --- and literally slept the remainder of that year. Specifically, I slept an average of 16-18 hours each day, and laid around napping the remainder of the time. I was utterly miserable. Even when I was "awake," I was craving sleep.
By what I believe to be God's providence, I saw Dr. Rye earlier this year. So far as I have been able to learn, there is no other place I could have gone to receive the blessing I've received. Dr. Rye understood immediately what was wrong with me, confirmed it through testing, and prescribed a medicine that literally, and truly, gave me my life back. After being on the medicine for about 54 hours I suddenly "woke up." The fog, the veil, and the fatigue are gone --- and two months later they are thankfully still gone.
Please support the work David and his colleagues are doing. I believe there are untold thousands of people who, like I was, are living in the misery of hyper somnolence. Many are misdiagnosed as depressed, suffering from chronic fatigue, fibromyalgia, or something else. The folks at Emory can offer them real hope.
With all good wishes,
A link to the New York Times " Patient Voices" where Dr. Rye speaks in his own words
An M.D. Becomes His Own Subject:
http://www.nytimes.com/interactive/2008/12/18/health/healthguide/TE_RESTLESSLEG.html (audio and pictures)
November 19, 2012
To Those Interested in Restless Leg Syndrome (RLS), also termed Willis-Ekbom disease
In 1990 I decided that I could no longer tolerate my leg pain and sleep issues. My wife noted that I had significant leg movements at night, such that her sleep was also interrupted. We lived in Kansas City at that time and I had access to excellent medical expertise. Physician A was sure that I suffered from fibromyalgia. I also consulted with Physician B, who conducted a sleep study. She concluded that I suffered from restless leg syndrome. Physician A argued that restless leg syndrome was not a recognized disease. I decided to go with the opinion from Physician B.
My doctor and I found that opiates were the only answer to gain sleep and quiet the leg movements. The tension was always to have just enough to gain some sleep, but endeavor to avoid addiction. I was able to function in my job as a retail supply chain executive, but I needed strong coffee to cut the morning drug fog. My mental processes were not as sharp or quick due to the drug usage.
We moved to Atlanta in 2001 and selected a internal medicine specialist at Emory Clinic as our primary physician. In taking my medical history, she strongly recommended I see neurologist David Rye (MD, PhD), whom she described as an expert in nighttime movements.
Dr. Rye turned out to be a lifesaver. He quickly pronounced my situation as classic RLS. In the first meeting, he ascertained that my mother and maternal grandmother has similar symptoms. He was sure that RLS had a genetic component. He ended that first meeting by stating that he wanted me to participate in his genetic research on RLS and then he prescribed a new drug plus an iron supplement. The new prescription enabled me to get off the opiates--and I was sleeping through the night! That one meeting was a major turning point in my life. In addition, David Rye was engaged in a scientific, research-oriented approach to the disease.
I advise anyone who suffers from RLS to consider Emory for the most advanced and knowledge-based treatment. Dr. Rye and his team continue to treat my severe RLS with their extensive knowledge and expertise, even though I now reside in North Carolina.
In 2007, Dr. Rye and his team published in the New England Journal of Medicine. They identified the genetic component for RLS. Restless Leg Syndrome is now a recognized disease, thanks to Dr. Rye and his colleagues at Emory University. In my profession, I consider investments in a critical sense. Simply stated, investment in Emory's RLS research has demonstrated high return. I have certainly benefited from Emory's pioneering research and I am sure that future generations will also benefit.
Since 2001, I have made contributions to Emory to support David Rye's research. I urge you to consider what has been accomplished and how you can play a part in this important, on-going effort.