If you have a broken arm or leg, people are inclined to offer their help. If you are elderly and frail, people tend to offer their help. If you are blind, people usually offer their help. If you have an obvious disability, people proactively reach out to offer their help.
What happens to those who suffer from an invisible disease – a disease that is emotionally and physically paralyzing but not visibly tangible? Without obvious physical indicators, it is difficult for us to offer our help. Hence, what happens when we are aware of someone’s invisible disease – do we offer help, or are we dismissive?
While this has not been quantitatively proven, generally, our reactions to an invisible disease tend to depend on our own personal frame of reference. In other words, if we have suffered something comparable we can more easily both sympathize and empathize. But even then, most of us have limited tolerance. More globally, people tend to dismiss what cannot be seen and as such, those who suffer from an invisible disease often have little to no emotional support. Chronically ill patients have stated that living this way is lonely and it is ‘like visiting a part of the world where no one speaks your language; no one understands you or your pain.’ Another person told me that she feels like ‘a ghost because people see your shell, but the real you that’s screaming, no one can see.’
Have you heard of Sjögren’s? Most people have not, but yet, it is one of the most prevalent autoimmune diseases, affecting over 4 million people in the United States alone. However, exact incidence is unknown because few studies have been published, and even these have been complicated by the use of different diagnostic criteria. The excellent news is that new criteria accepted by both the U.S. and Europe has just been published (http://www.sjogrens.org/news/482-new-classification-criteria-for-sjogrens ). A few facts about this systemic autoimmune disease that affects the entire body:
– Symptoms may remain steady, or worsen
– Some people experience mild discomfort, others suffer debilitating
symptoms that greatly impair their functioning; symptoms of extensive
dryness, other serious complications include profound fatigue, chronic pain,
major organ involvement, neuropathies and lymphomas
– Can even cause dysfunction of organs (kidneys, gastrointestinal system,
blood vessels, lungs, liver, pancreas), and central nervous system
– Patients also have a higher risk of developing lymphoma
– Nine out of 10 patients are women.
As with many diseases, early diagnosis is of fundamental importance however, since symptoms of Sjögren’s mimic other conditions and diseases, this disease can often be overlooked or misdiagnosed. Can you imagine that only a few years ago it took about 6 years to receive a diagnosis? The Sjögren’s Syndrome Foundation has worked hard to reduce this long diagnostic period and as a result, a Foundation survey in the fall of 2016 showed that it has been reduced to 3 years.
Katherine (Kathy) Morland Hammitt, Vice President of Medical & Scientific Affairs for the Sjögren’s Syndrome Foundation, asks us – as doctors, researchers, and individuals – to pause for a moment and acknowledge how difficult it is to live with an invisible disease. Even worse, imagine living a normal life, and then, increasingly suffering from an onslaught of ailments, resulting in a diagnosis and the assumption of a new normal. A new normal that is extremely painful and debilitating, ultimately upending families, careers and daily lives, and one that cannot be readily cured: A dry eye doesn’t disappear with a few eye drops. A dry mouth cannot be assuaged with a sip of water. And chronic fatigue doesn’t disappear with an extra long nap. Sjögren’s is an all-encompassing condition.
Acknowledging the disease and its ramifications is only a first step. The step that follows is collaboration, and Kathy encourages us to “join our voices together around the world” to mobilize funding so that awareness, research and therapies are more aggressively introduced.
Kathy herself is a Sjögren’s patient, diagnosed with Sjögren’s in 1984 shortly after her daughter was born. Her symptoms were intensely debilitating and her fatigue was so “toxic” that not only did she struggle to care for her infant but ultimately; she was forced to resign from her role as a television news producer. While we now know that Sjögren’s is the second most common autoimmune disease, at the time Kathy was diagnosed, there was little awareness about the disease. As such, her interminable visits to the doctor reaped no conclusive diagnosis, and she spent two years using penicillin as a Band-Aid to treat what was assumed to be an unknown infection. In fact, the doctor who finally diagnosed her bicycled home to fetch his medical school notes that related to the disease; all two lines fo medical notes.
Joining the Sjögren’s Syndrome Foundation seemed like an obvious choice, personally and professionally. Not only did Kathy want to learn more about what was taking place in research, she hoped to spark greater awareness, interest and groundbreaking research for the disease, ensuring the next generation would have a cure for this insidious and painful malady.
Many steps in the right direction have been taken towards researching Sjögren’s Disease as well as its many symptoms, such as dry eye. Kathy states that TFOS has been instrumental in terms of generating awareness of the latter and further, has offered a strong infrastructure to move forward research for dry eye, which in turn impacts dry eye and Sjogren’s. During our discussion about TFOS, Kathy asserted that “Dr. David A. Sullivan has been a model in what he has accomplished; he had a wonderful vision for bringing together international leaders and TFOS.” She attributes much of this profound impact to the publication of TFOS DEWS in 2007 since encouraged increased interest in the international dry eye medical and scientific communities, ultimately inspiring the launch of many start-ups focused on dry eye.
As with most things in life, more needs to be done for the awareness of ‘invisible diseases such as dry eye, and Kathy hopes to see the same interest and dedication directed towards Sjögren’s and rheumatology.
Kathy further hopes to compel further collaboration, mimicking the “moon shot” concept recently seen in cancer research. The exact cause of Sjögren’s is still unknown – though it has been associated with both environmental agents and complex hereditary factors – and working in consortiums rather than in silos could accelerate an understanding of the disease’s origin, facilitating treatment. In addition, there isn’t enough research into western treatments or the compliment or eastern or alternative medicines, as more funding is needed.
In the past few years Europe and Japan have accelerated their support for research. The Sjögren’s Syndrome Foundation is conducting surveys to learn more about patients and in fact, another of their achievements was to change awareness with a breakthrough goal of cutting the time of diagnosis by 50%. While Sjögren’s affects nine women for every man, and diagnosis tends to occur most often in middle-aged women, Kathy suspects that as we learn more about the disease and increase recognition, diagnoses will increase in younger age groups.
Last, more awareness and education are needed for both patients and the community at large. Kathy explained that living with dryness 24/7 implies that normal tasks (e.g. looking at a computer, being outdoors in windy or dry conditions) are rendered extremely difficult. It is hard for people to understand what patients face day to day but the step is in raising awareness.
Lets get rid of the ghosts, shall we?
Director, TFOS Global Ambassador Program