Roughly two years ago, I used to be diagnosed with Parkinson’s disease. As much as that time 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 used to be 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 used to be fortunate that I saw a positive change with dramatically reduced symptoms immediately from the prescribed medications. Unfortunately, not all Parkinson’s patients experience such a positive response to plain Parkinson’s medications.
Within 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 used to be met with compassion and understanding which I discovered to be extremely comforting. I quickly realized that the majority people have had some type of contact with a Parkinson’s patient. I initially had no idea how prevalent this disease was. The overall population appeared to possess a comparatively high level of awareness of the apparent Parkinson’s symptoms. This understanding, I think, is the premise upon which I felt such an outpouring of compassionate sensitivity from so many. I would really like to imagine that the majority, if not all Parkinson’s patients, have similar experiences.
Parkinson’s disease has been the topic of medical research for a lot of a long time. In consequence, an important deal of medical and social infrastructure has been created to supply patients with each quality medical care and emotional comfort to handle the physical symptoms in addition to psychological well-being. The extent of medical awareness of the symptoms of Parkinson’s disease by the overall population has served to create very open, positive attitudes toward those affected by this disease. Those living with Parkinson’s are viewed not with pity, but with compassion. I think that 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 regularly produces a complete host of painful and, at times, debilitating symptoms, that may eventually affect multiple organs, 20 years ago. Essentially the most intense and damaging symptoms are inclined to be recurrent, and sometimes debilitating joint pain attributable to subluxations, or for some, full dislocations of the joints.
In stark contrast to Parkinson’s disease, there have been few public or private resources dedicated to research on the causes and potential treatments for the varied sorts of EDS. This might be the results of the erroneous belief that EDS is a rare condition, not justifying the associated fee of in-depth research. Over the past few years, the research done by NIH suggests that EDS is removed from a rare condition. The variety of suspected cases in most people has risen from 1 in 5,000 individuals to 1 in 500. Yet despite these numbers, research on identified cases stays limited and any latest knowledge relative to EDS has not been effectively utilized by the broader medical community. Many trained medical professionals don’t possess even rudimentary knowledge or acceptance of this condition. Attributable to this, many patients remain undiagnosed or misdiagnosed, leading to ineffective and inappropriate treatments.
Despite one of the best of intentions, many doctors often provide services that intensify the patient’s pain and suffering. In consequence, most EDS patients spend years–sometimes a lifetime–affected by painful physical symptoms and high levels of psychological stress, unable to guide normal lively lives. To make matters worse, many EDS patients, when searching for medical attention, are sometimes labeled “drug seekers” or diagnosed with one mental health diagnosis or one other. Added to this, many patients also suffer from social isolation and societal alienation attributable to this lack of expertise on the a part of the medical community. This leads to a scarcity of acceptance as to the legitimacy of their self-identified pain and psychological discomfort.
The medical community is starting to take notice of recent research into EDS, which hopefully will provide the premise for even further inquiry into the possible causes of this horrific condition. This could result in simpler treatment modalities. It stays critically essential that public awareness relative to EDS be expanded. Nobody living with chronic conditions should feel isolated or alienated by health care providers, family, friends, colleagues, or society at large. Just as within the case of those affected by 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 identical level of care and compassion as cancer patients or Parkinson’s patients.
Health care professionals, through their organizations and institutions, must prepared the ground in expanding the knowledge base into the etiology and treatment of EDS. This might play a critical role in making a positive, psychological environment for those affected by this life-altering disease. I need my wife to have the identical access to treatments and receive the identical compassion as I actually have these past two years.
