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Anything that is rare, not very common or unknown to us usually provokes curiosity or fear. Whether we approach it, explore it, and over time accept it, or whether we tend to move away, as if it did not exist, depends on many factors, including our culture, education and stereotypes.
Illness is a very delicate and particularly sensitive issue, as it has always led to stigmatization, social distance and exclusion. Even if nowadays we are more informed about a variety of relevant topics, still many people with health conditions feel as if they have to hide their reality, afraid of being marginalised. Afraid of having fingers pointed at them. Afraid of being discriminated against.
Now, try to imagine what it feels like for someone who suffers from a rare disease. A rare disease is a condition that affects a very small percentage of the population, and that therefore is ignored by most people. Additionally, it is usually visible due to its apparent symptoms, distinguishing you every single moment of the day from others. Nobody should feel embarrassed about these differences; yet many people are not ready to accept them, respecting and living next to these individuals.
According to the European Organisation for Rare Diseases (EURORDIS), in Europe a disorder is defined as rare when it affects less than 1 in 2000 citizens, whereas in the USA when it affects fewer than 200,000 Americans at any given time.
The Rare Disease Day is an international campaign that has been promoted all over the world every February since 2008. The campaign aims to encourage all individuals suffering from a rare disease to come out of the closet to advocate for their rights, and to stop hiding the marks that show their difference. Furthermore, the campaign aims at raising awareness amongst the general public, inviting people to support rare disease patients during their battles in order to improve the quality of their lives.
During that special day, patients, carers, associations or advocates, are all invited to celebrate rarity and uniqueness. To show that being rare and not like everyone else does not make you a unique species, but a unique human being. To fight for equality, diversity and inclusion, so that 350 million patients worldwide will finally become visible without being afraid or embarrassed about themselves, and will be able to find their place within the society.
Being rare and not like everyone else does not make you a unique species, but a unique human being.
Today, we have reached a point where difference should no longer provoke fear, and therefore dispassion and lack of solidarity and compassion; rather, it should stimulate our interest, curiosity and empathy. If we don’t know and we don’t understand, we have all the tools in our hands to learn and educate ourselves as much as we want. This is something we should also teach our children: ignorance, one of the causes of social exclusion, can be fought only with continuous education and tolerance. Day-by-day, hand-in-hand!
[Head picture by Brieuc Daniel]
Elina Miaouli is a translator, a columnist and a Rare Disease Activist. She initially studied translation at Institut supérieur des traducteurs et interprètes in Brussels, Belgium, and later Social Sciences at the Open University, UK. She completed the circle of her education by studying Editing and Proofreading of literary texts at Metaichmio Publications in Athens, Greece.
Herself being inflicted by a Rare Disease, she volunteers as a columnist, penning articles on the subject, in various e-health magazines. She has her own Facebook Page, “Information on Rare Diseases“, which helps highlight all relevant concerns by translating articles dealing with the issue, and she recently created a website, “The World of Rare Diseases“, aiming at keeping patients and caregivers informed.