Approximately two years ago, I was diagnosed with Parkinson’s disease. Up to that point in my life, I’d experienced 73 years of relatively good health. This diagnosis was frightening, to say the least. While I possess some general knowledge of the disease, I was totally unaware of the prospects of effective treatment. I sought help from a staff of highly trained specialists. My treatment began immediately following the confirmation of the initial diagnosis. I was fortunate that I saw a positive change with dramatically reduced symptoms right away from the prescribed medications. Unfortunately, not all Parkinson’s patients experience such a positive response to standard Parkinson’s medications.

In the months following my diagnosis, I shared with some family and friends who inquired about my situation, some details of my medical condition, and the impact it was having on my life. Without exception, I was met with compassion and understanding which I found to be extremely comforting. I quickly realized that most people have had some form of contact with a Parkinson’s patient. I initially had no idea how prevalent this disease was. The general population seemed to possess a relatively high level of awareness of the obvious Parkinson’s symptoms. This understanding, I believe, is the basis upon which I felt such an outpouring of compassionate sensitivity from so many. I would like to believe that most, if not all Parkinson’s patients, have similar experiences. 

Parkinson’s disease has been the subject of medical research for many decades. As a result, a great deal of medical and social infrastructure has been created to provide patients with both quality medical care and emotional comfort to address the physical symptoms as well as psychological well-being. The level of medical awareness of the symptoms of Parkinson’s disease by the general population has served to create very open, positive attitudes toward those suffering from this disease. Those living with Parkinson’s are viewed not with pity, but with compassion. I believe this is critical to the effective treatment of this disease. 

My wife, Ellen Lenox Smith, also suffers from a chronic medical condition. She was diagnosed Ehlers-Danlos syndrome (EDS), a connective tissue disorder she was born with which often produces a whole host of painful and, at times, debilitating symptoms, that can eventually affect multiple organs, 20 years ago. The most intense and damaging symptoms tend to be recurrent, and often debilitating joint pain caused by subluxations, or for some, full dislocations of the joints. 

In stark contrast to Parkinson’s disease, there have been few public or private resources devoted to research on the causes and potential treatments for the various types of EDS. This is probably the result of the erroneous belief that EDS is a rare condition, not justifying the cost of in-depth research. Over the past few years, the research done by NIH suggests that EDS is far from a rare condition.  The number of suspected cases in the general public has risen from 1 in 5,000 individuals to 1 in 500. Yet despite these numbers, research on identified cases remains limited and any new knowledge relative to EDS has not been effectively utilized by the broader medical community. Many trained medical professionals do not possess even rudimentary knowledge or acceptance of this condition. Due to this, many patients remain undiagnosed or misdiagnosed, resulting in ineffective and inappropriate treatments. 

Despite the best of intentions, many doctors often provide services that intensify the patient’s pain and suffering. As a result, most EDS patients spend years–sometimes a lifetime–suffering from painful physical symptoms and high levels of psychological stress, unable to lead normal active lives. To make matters worse, many EDS patients, when seeking medical attention, are often labeled “drug seekers” or diagnosed with one mental health diagnosis or another. Added to this, many patients also suffer from social isolation and societal alienation due to this lack of knowledge on the part of the medical community. This results in a lack of acceptance as to the legitimacy of their self-identified pain and psychological discomfort. 

The medical community is beginning to take notice of recent research into EDS, which hopefully will provide the basis for even further inquiry into the possible causes of this horrific condition. This should lead to more effective treatment modalities. It remains critically important that public awareness relative to EDS be expanded. No person living with chronic conditions should feel isolated or alienated by health care providers, family, friends, colleagues, or society at large. Just as in the case of those suffering from any chronic and potentially debilitating medical condition, a critical component of treatment is collective, compassionate care, generated by a knowledge-based understanding of the condition. EDS patients deserve the same level of care and compassion as cancer patients or Parkinson’s patients. 

Health care professionals, through their organizations and institutions, must lead the way in expanding the knowledge base into the etiology and treatment of EDS. This could play a critical role in creating a positive, psychological environment for those suffering from this life-altering disease. I want my wife to have the same access to treatments and receive the same compassion as I have these past two years.

–by Stu Smith

About the Author:

Stuart Smith is the co-director for Medical Cannabis Advocacy for U.S. Pain Foundation, along with his wife, Ellen, who lives with two rare conditions. Stu has and continues to be Ellen’s caregiver and together, they raise awareness surrounding invisible pain and the effectiveness of medicinal marijuana for pain patients.

Ellen and Stu live in Rhode Island, and have raised four sons and enjoy their five grandchildren.

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