Almost 20 years ago, my wife Ellen was diagnosed with a rather rare medical condition called Ehlers-Danlos syndrome (EDS). Simply put, this condition limits the body’s capacity to produce healthy collagen. Collagen is critical for the production of healthy connective tissue, which is invaluable for normal bodily function. Based on our current knowledge of this condition, no known treatment will cure it. The only approach is to manage symptoms to minimize damage to the body. One of the most common symptoms of EDS is chronic pain, in conjunction with joint instability.
My wife Ellen and I were both in our early 50s at the time of her initial diagnosis. We were looking forward to many years of fulfilling, purpose-driven activities. The more we were able to learn about EDS and its potential impact on an individual’s body, the more aware we became that depending upon the severity of Ellen’s symptoms, the trajectory of our lives could be altered dramatically. Ellen’s symptoms, as they gradually emerged, proved rather severe and often difficult to endure.
As a result, the pathway of our lives took us in a new and unanticipated direction. At one point, in the years following the onset of acute symptoms, Ellen was confined to a wheelchair. This was the result of joint instability and the physical impact of recovering from multiple surgeries; 27 in a relatively short period of time. Ellen and I remained committed to not allowing EDS to dominate our future and undermine our capacity to experience meaning and joy in our daily lives. We remained hopeful.
While chronic pain, I believe, proved to be the most impactful symptom over time, EDS created a whole host of other hellish symptoms, from extreme brain fog to joint instability and even gastrointestinal disorders. Collectively, in conjunction with chronic pain, these symptoms could be physically and emotionally debilitating. Over these past years, Ellen required 27 surgeries to address tendon and ligament deficiencies and neurological problems created by instability in her neck, and upper and lower spinal cord. Rehabilitation from multiple surgeries over a relatively short period placed an incredible amount of physical and emotional stress on Ellen. She always responded with self-discipline and courage.
Over time, Ellen and I realized that our life’s circumstances had changed dramatically. We needed to adapt to our new circumstances. We were determined not to allow fear, real or imagined, to deprive us of the hope that we might someday experience the confidence necessary to resist the often overwhelming impact of this condition on our lives, to realize a better future. We hoped to create the means to manage Ellen’s pain and stabilize her loose joints to maintain a degree of normal motor activity that would prove to be our “new normal.” As in the case of many rare diseases, resources for research were limited. We were under no illusion that any type of medical breakthrough would produce a cure for EDS in the foreseeable future.
As a couple, we aggressively pursued effective treatment options with little guidance from the professional medical community. Our first task was to attempt to locate medical professionals with some knowledge of, and even better, expertise in treating this relatively rare condition. This search for specialized treatment often proved extremely frustrating, emotionally draining, and always incredibly time-consuming. The explanation for the lack of resources to diagnose and treat EDS patients became obvious very early on in our search. Medical textbooks barely mention EDS. The obvious result is a lack of knowledge in understanding the symptoms of EDS by the vast majority of doctors. For EDS patients, the result of this deficit often proves disastrous.
Most of the EDS patients Ellen and I have had contact with over the past 15 years have been the victims of physicians unknowingly suggesting treatment with not only no beneficial effect but all too often a harmful impact. The source of the problem, as in the case of many conditions classified as rare, is a lack of funding for comprehensive clinical research. Ellen required two surgeries due to inappropriate physical therapy techniques being utilized by well-intentioned physical therapists.
Ellen and I were willing to travel anywhere in our quest to find an effective treatment for her condition. This included both conventional and non-conventional practitioners. We were hopeful that some form of treatment did exist. Our best resource proved to be other patients who had found themselves in similar circumstances. These contacts led us to several physicians and physical therapists who had, over the years, developed some expertise in diagnosing and treating EDS patients. These individuals were far and few between. We traveled from the East Coast to the Midwest to Texas in our pursuit of appropriate help. Eventually, we were able to locate several EDS-savvy doctors. Ellen would not be alive today had we not found this group of professional, kind-hearted, committed physicians and physical therapists.
The sad truth remains that, given the current structure of funding mechanisms supporting our medical system, few physicians have the time or perhaps the interest in treating rare conditions. It is simply not cost-effective, given the financial realities, to effectively utilize a physician’s time as the medical system is presently designed. While we were ultimately successful in finding doctors and physical therapists capable of developing treatments for Ellen’s specific symptoms, the journey proved emotionally exhausting. The process itself was detrimental to my wife’s emotional state, which impacted her overall health.
During her treatment over the last 15 years, Ellen underwent many surgeries. A number of neurological surgeries presented a considerable risk, and the prognosis was guarded. Through all of the surgeries and extensive recovery periods, we would remain steadfast in our commitment to our therapeutic goals. We were determined to make every effort to reduce Ellen’s pain to a manageable level and reestablish a degree of normal motor function. Ellen has not had to depend on a wheelchair for years. Once a master swimmer, she has adapted her stroke, allowing her to swim for 40 minutes, four times per week. She also walks over one mile twice per week.
The one issue which, in my opinion, made the greatest contribution to the effectiveness of Ellen’s treatment was the introduction of cannabis as a medication to assist her in managing her pain. For Ellen, a daily dose of cannabis night oil was directly related to her newfound capacity to manage her pain.
Following her initial diagnosis, Ellen began seeing a pain specialist. One physical symptom experienced by many of those living with EDS is having body chemistry that lacks the capacity to effectively metabolize many prescribed and over-the-counter medications. This can effectively rule out the vast majority of available pain reduction remedies. After reviewing Ellen’s medical history documenting her severe reactions to almost all of the pain treatments her doctor had to offer, her pain doctor suggested she explore the possibility of utilizing medical cannabis. Fortunately, medical cannabis had just become legal in Rhode Island, where we live. Ellen began taking a daily dose of cannabis night oil immediately following the doctor’s recommendation.
For years, EDS had deprived Ellen of healthy, restorative sleep. From my perspective as Ellen’s caregiver, medical cannabis was directly responsible for Ellen’s renewed capacity after all that time to achieve deep, healthy, restorative sleep. I remain convinced to this day that the resumption of healthy sleep cycles serves to enhance the efficacy of all aspects of my wife’s treatment plan. In Ellen’s situation, I believe that chronic sleep deprivation was inextricably linked to what I would refer to as a pernicious, diabolical synthesis. I believe that in Ellen’s case, chronic sleep deprivation, in conjunction with elevated stress and anxiety levels, and most critically higher levels of chronic pain were directly connected.
I am also convinced that for many chronic pain patients, like my wife, medical cannabis can lead to a restoration of a patient’s capacity to realize healthy, restorative sleep. I believe that the lack of therapeutic sleep, pain, and stress all have a direct correlation and that without addressing the sleep issue, progress in an individual’s treatment will remain incredibly difficult and, in many cases, elusive.
In Ellen’s situation, medical cannabis proved to be a godsend. Cannabis did not eradicate Ellen’s pain, but it did allow her to manage her pain, which I am convinced led to an increased level of effectiveness in all aspects of her treatment. In our home, we often refer to cannabis oil as a magic elixir. From my perspective, medical cannabis was not only critical in the process of improving Ellen’s prospects of better health outcomes, but I believe that the positive changes in my wife’s health, once she began using medical cannabis, would also serve to restore our capacity as a couple to believe in the possibility of resuming a more normal life to include all of the joys and sorrows embedded in the human experience.
Unfortunately, for those living with chronic pain who may choose to consider cannabis as a possible treatment option, geography dictates accessibility. While a majority of states have adopted laws and policies allowing for the medical use of cannabis, a fair number of states have failed to take any steps to allow legal access to this natural, plant-based medicine. This failure to act on the part of these states is both tragic and cruel. To deprive chronically ill patients of any possible source of relief from their physical pain and emotional suffering is, in my opinion, unethical and perhaps even immoral.
Those afflicted with long-term disabling conditions and medical conditions that cause chronic pain are among the most vulnerable of our fellow citizens. These individuals need and deserve all the support society can provide. These patients include members of every race, religion, and economic stratum of society. We all know them; some of us know them intimately. These individuals should not be denied any opportunity in their quest to improve their long-term health outlook. Pain relief is a right, not a privilege.
–by Stu Smith, Co-director of Medical Cannabis Advocacy, U.S. Pain Foundation
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