Rare Disease Day 2017
Written by: Amanda Henderson, February 28, 2017
As I read others' stories about the daily struggles they manage, I reflect on the crucial need for advocacy in the face of rare disease. Checking the facts and realizing what a vast group of people are effected, it's a wonder that in our time of technology and communication we are not further along in the process of figuring out treatments and cures for a better future for so many survivors. There are 350 million people globally who have 7,000 different rare diseases. That is enough people to populate the third largest country in the world. Yet, medically, the ball is dropped continually, and it can cost everyone on earth.
As we bring rare disease to the forefront on this day, I also am reminded of how different our daily lives can be compared to that of a genetically normal person. We undergo rigorous testing, numerous appointments, and a barrage of pharmacologics that may or may not work or can exacerbate symptoms. We endure chronic pain, gastrointestinal issues that keep all systems from working correctly, sleeping disorders that keep us from functioning properly, autonomic functions that remain out-of-sync that keep us from being able to ignore the functions of our body that should be plodding along without a thought, and so many more issues that are unimaginable to put all together in one list, let alone one body. There are many misconceptions about our appearance versus our effectiveness at living life, and the psychology behind having a devastating illness and dealing with being treated differently in our communities can have debilitating effects, as well.
Imagine, if you will, being inherently different in ways that the vast majority does not understand. Living day to day trying to make our differences work for us as much as we can can be disheartening and exhausting. It makes us think and feel differently about life in general, as well. We tend to develop sensitivities to everything around us because we live inside our heads so much of the time, and because we compare ourselves to normal social standards that we feel we fail at in so many ways. We live outside the box, which makes us extremely empathetic to the world around us. At times, we feel more in touch with devastation, ruin, and isolation than the healthy, productive lifestyles that many people are accustomed to. In turn, it makes us compassionate and nurturing in ways that many people wouldn't understand. It's a vicious circle of confidence and inadequacies that we wrestle with. It can help to reach out to each other, but not having the commiseration of loved ones can lead to feeling desperately alone in this fight.
Advocacy for rare disease and its effects is important for finding the help that so many of us need to get through and deal with every aspect of each illness. Being connected on social media has brought to light so many issues and treatments that many doctors aren't even aware of, because they lack the information and connections that rare disease carriers are so desperate for. Please spread awareness so doctors from California to New York can help the same patients throughout the country and the world. We are stronger together!
