Who cares about the Syndrome!

18

I tried to find statistics that quantify how many people are suffering from a syndrome. Anyone. I found some data that illustrates the situation of disabled people in the world
“a worldwide estimate of about a 10-12% rate of disability seems reasonable. Unfortunately, though, quality data from enough countries is not yet available to make a definitive estimate.
It is extremely important, however, to keep in mind that disabilities range from severe to moderate to mild. It is therefore much more useful to present information on the range of disabilities instead of reporting a single prevalence rate.”

Disability affects hundreds of millions of families in developing countries. Currently around 10 per cent of the total world’s population, or roughly 650 million people, live with a disability. In most of the OECD countries, females have higher rates of disability than males.”

However, some syndromes are not directly translatable into disability, for which the data are not transferable and the association is irrelevant.
It is hard even to find information on how many different types of syndrome are known.
This list seems detailed, but for example, exactly Usher syndrome is missing.
In 2006 the estimated amount of rare diseases already classified was between 6000 and 7000, but this number s growing steadily with the advance of medical science and genetic research. Moreover, not all rare diseases are syndromes and vice versa.
But that’s not the point.

I recently spent a weekend with a friend who has Asperger syndrome.
I do not think that reading something about this disease can really give you an idea of the real situations in which you may incur. You can not imagine what could be the conversations, mannerisms, phrases, expressions, implications. In the same way that I’m convinced that having seen a case does not mean you know the syndrome.
But this friend is first Mario or a guy suffering from Asperger Syndrome?
In other words, we tend to stigmatize people with the syndrome they have, almost more than considering their individual and unique characteristics , either related to or resulting from a syndrome.

I am the first that occasionally see myself more as an Usher than as Dario. As if having a visual and hearing impairment represents a large part of me. I myself never stop to consider these characteristics as the most important and anyway some that identify personality.
My friend Mario behaves quite unusual, such as getting angry out of proportion for little things which I do not even notice (an inspector who asks to see his ticket can lead him to rage) and not knowing or not to considering any social conventions (it is not respectful to shout at 4 am in an apartment in a building). But these behaviors as justifiable from a medical condition, are characteristic of Mario. He is like that, as much as I am irritable, clumsy, awkward.
Another very clear example is that of Down syndrome. Just one person has the hallmarks of a Down, and he/she is Down. It is very hard to ignore this and then break away from all the preconceptions that implies. But people with Down syndrome are Clare, John., Mark, Peter. They can not be placed in the group of Down and be considered only as such.
Grouping people into syndromes is a form of racism.

So, who cares of the Syndrome! Everyone has a name, his/her own name. That must be his/her only name, not the name of the Syndrome.


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