The more that people are aware of these rare diseases, the more that the space patients can move within the society widens.
Hello, this is OffCrowd’s Design Editor, Chelsea. I am usually the silent woman behind some of the publication materials and campaigns one can see here. However, this time, I am penning down an important letter to you, our readers.
I have Rheumatoid Arthritis-Interstitial Lung Disease Pulmonary Fibrosis. It is a rare, progressive lung disease that stemmed from an autoimmune disease called rheumatoid arthritis. People of any age can have rheumatoid arthritis; it is the lung complication that I have that is rare. There is no cure for both. The treatments I am undergoing now is to alleviate my symptoms and to stop the illness from progressing fast.
You might not believe me but do try when I say that I am lucky to even have options to prolong my life and to maintain the standard quality of life that I aspire for, given my limitations. Tens of millions are not. Some wait throughout their lifetime until death comes to embrace them. Some do not even know what illness they have. As such, please consider supporting rare disease research and the science community behind it. This cause is under the third sustainable development goal of the United Nations.
So, why should you support rare disease research?
One, supporting rare disease research means collectively caring for millions of patients worldwide. There are more than 7,000 known rare diseases (Global Genes, 2019) of which various stages of research teams are working on. In the US alone, there are 25 million people who desperately need the outputs these teams will produce to have that quality of life. (Madhusoodanan, 2016) Additionally, there are thousands of people whose disease/syndrome has not been genetically identified yet.
Two, supporting means patients who have the same disease/syndrome can contact with each other. These research labs and hospitals have the power to connect patients to one another and perhaps create their own ecosystem of support and collaboration. Understand that simply meeting someone who has the same rare disease as you is powerful enough to make you feel not alone.
Lastly, supporting means the stigma against some rare diseases will lessen. The more that people are aware of these rare diseases, the more that the space patients can move within the society widens. Space here connotes options, chances, and opportunities for them to experience life in different aspects and dimensions. Just imagine a research-based performing and visual arts school for the rare disease kids. Wonderful, right?
There is an Atenean professor by the name of Bobby Guevarra who once quipped, “If you want to save the world, you have to absorb its pain.” If you are on the precipice of supporting this cause, I hope you remember not to pity anyone. Someone’s lifestyle nor values are not essentially superior to another. What we hope here is that we all be genuinely moved to action by these people’s pain. The patients here do not need a superhero; they need willing and kind-hearted people to work with.
OffCrowd is a platform to report working solutions as well as discuss concepts and ideas to nourish solutions among all individuals.Let us know the groups or individuals already working towards these, let us know existing policies if we’ve missed any, and discuss in the comments.
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