Rare Disease and Social Media: Making Connections
Being Alone and Disempowered
Keeping illness, pain and suffering a secret for years is the reality for many people with rare diseases. Now, on social media, they are writing about it, sharing the desperation and the hurt. And they are finding each other in the process.
Joy Aldrich kept her diagnosis of Charcot-Marie-Tooth a secret from everyone (including her physician) for 33 years.1 Dawn Nellor, a patient with pulmonary sarcoidosis, describes one reason for this, “The behavior of past appointments with physicians…have numbed me to their raised eyebrows and the ‘look-away’ that represents disbelief.” 2 In a Forbes article about patients with rare disease, writer Judy Stone notes: “A huge burden for patients with chronic pain and fatigue is being told that they are crazy.” 3 Katherine Meizel says in the 2017 Experts by Experience compilation, “The worst experience I’ve ever had — worse than the most debilitating symptom — was not being believed, over and over again, for decades.” 4
After hundreds of hours spent in the healthcare setting looking for answers, patients know when “the arms crossed and the chair rolls back that the doctor’s next questions will be, ‘Are you sure it’s not stress?’ ‘Do you exercise?’ ‘Are you on antidepressants?’ ‘Why don’t you see your psychiatrist or try a different medication?’” 2
Patients with rare diseases describe being disempowered over a period of years in the effort to get a diagnosis. As Lisa Parker, a woman living with mitochondrial disease describes, “One doctor told me I was wasting everyone’s time and should see a shrink despite the many abnormal test results that would have been impossible to fake. How could I be so sick when I looked so good? I often feel like I have to keep proving I am really sick.” 4
Katherine Meizel, an assistant professor of ethnomusicology who has mast cell activation disorder writes, “You’re told your tests are fine, the pain couldn’t really be that bad, there are patients with real problems in the waiting room….If you cry in the office, it’s evidence that your emotional state is causing your fainting spells. So you learn to smile and lie so they won’t send you to another psychiatrist, you learn to make the joke about white-coat syndrome first when your heart rate is 120 at your yearly physical, you learn to nod and agree when you hear, ‘Well, everyone gets tired.'” 4
Empowerment Through Connection
Beyond communicating treatment information and advice on healthcare social networks like Inspire, patients with rare diseases learn they are not alone. “The outpouring of support I received gave me…confidence and empowerment,” Joy Aldrich said. 1
Inspire’s Rare Disease Communities have over 250,000 members across 2600 rare conditions. With thousands of community discussions and private conversations, people affected by rare conditions are finding each other and have a voice.
Empowerment Through Participation in Research
Researchers are discovering that social media can be a boon in trying to connect with people with rare conditions. In a recent study published in the journal Pediatrics, researchers spent a year using Facebook, Twitter and other mainstream social media platforms to locate and survey a group of 671 people born with a single functional ventricle in their hearts who had undergone a special surgery. 4
Working with Inspire, researchers have experienced significantly shorter turnaround times than described in the Pediatrics study. For example, Inspire conducted a survey in 2016 of members with tuberous sclerosis, a rare condition affecting between 25,000 and 40,000 people in the US. In just 2 weeks, Inspire fielded 117 responses, 70 of which came in the first 24 hours. In 2015, for patients within the same condition, Inspire obtained 100 completed surveys in 17.5 hours.
People with rare diseases are eager to connect with each other and with the research community to find answers to their conditions. With Inspire, they are able to achieve these goals and, in doing so, experience a greater sense of empowerment and connection.
For some of the rare disease communities on Inspire, like Wilson’s disease or Sarcoidosis, the number of members have reached a relative critical mass that it can represent almost 40% of the statistical prevalence for the condition in the US. The value of these rare disease communities goes beyond the support of market research. For clinical studies or trials sponsors, finding research cohorts earlier can significantly remove risk from clinical research projects by effectively reducing the time needed to find and qualify patients.
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