Saturday, February 14, 2009

Respite For Those With Rare Diseases

image by cmseter,

Those Diseases Too Hurt, That Affect A Small Minority

How does it feel to be neglected, overlooked and ignored? Not the most ideal of circumstance to find oneself in, is it? This is precisely what people who are afflicted with diseases that the majority is fortunate enough to not be afflicted with, find themselves in.

Female with Alopecia Areata Totalis - wiki_*

* Female with Alopecia Areata Totalis - wiki. This condition affects 0.1% to 0.2% of humans, occurring in both males and females.

A disease is a disease is a disease. Makes no difference whether a medical condition is experienced by just one in this world or very many. But the problem with rare diseases is that because the number of people who are afflicted are in a minority, not enough is done to investigate them and to find out the underlying causes and to work out their intervention techniques. Meanwhile, those who carry the creatures of such diseases suffer silently, get misdiagnosed hopelessly, often bear psychological / psychosocial ostracism, and have no practical support whatsoever from the society. There indeed is comfort in numbers. It indeed feels good to be part of the majority.

Bloom Syndrome - bio.davidson.edu_*

* Bloom Syndrome - A rare chromosomal disorder for which science has no cure yet.

It is sad to feel all alone, an island of isolation in the ocean of humanity, people everywhere around you, people who complain of their own little problems which get taken care of, but not have a single soul around who understands what you are going through. And worse, people can only sympathize but cannot help, because either the medical community is too busy or there aren't enough grants going round to be invested into investigation.

Child afflicted with Townes-Brocks syndrome - reanna.miller.home_*

* Child afflicted with Townes-Brocks syndrome - reanna.miller.home. Fewer than 200 people have this disease.

It is in this background that a "Rare Disease Day" is being organized on February 28, 2009 by the National Organization of Rare Disorders (NORD) in the US, and by the European Rare Disease Organization (EURORDIS) in Europe - with plans to observe this day globally on the last day of February each year.

Rare Disease Day_*

* Rare Disease Day Logo

There are more than 1,150 medical conditions that have been identified to be afflicting human beings, but for which there is either no money being set aside nor any resources being allocated nor research personnel being drafted to conduct research and investigations. The list includes both biological as well as psychological conditions. For instance, Antisocial personality disorder (ASP) is a mental illness which usually manifests itself during adolescence, before the kid turns fifteen. A kid with ASP will exhibit very little concern for others' rights, very little or no respect of the standards of morality of their region or community. The actions and manners of such kids are manipulative and exploitative and without remorse. Sadly, it is quite possible that the people around them might not even look at this behavior as a "personality disorder", so there is no attempt to try and seek advice.

Black hairy tongue, wiki_*

* Hairy tongue - wiki.

Or let's see another medical condition in this list. It's called the "LEOPARD Syndrome". This exotic-sounding disease is called by quite a few other names, and is a result of a different "missense mutation of the same gene". A single molecule somewhere in the DNA decides to swim contrary to the mainstream, with the result that you become a different personality altogether. Even researchers concede that it is not clinically possible for them to identify accurately whether the patient in their custody is afflicted with LEOPARD syndrome or with a similar condition called Noonan Syndrome (for which apparently there is some hope for cure). Now where does the individual with LEOPARD go to for solace? A LEOPARD syndrome patient spends money and time in getting treated for a different condition altogether and still remained uncured.

Thirty-seven year old, second generation patient, exhibiting hypertelorism, broad nasal root, slight ptosis - wiki._*

* Thirty-seven year old, second generation patient, exhibiting hypertelorism, broad nasal root, slight ptosis - wiki A LEOPARD syndrome case.

Every entry in this list of over 1,150 rare diseases has a story to tell - a story of pain that nobody can understand, a story of neglect by a society that pays attention only when the disease has inflicted a minimum critical mass of the human populace. Here is the list: Here is the NORD website:, and here is the EURORDIS site:

image by craigpj,

[While waiting for research on healing biological conditions of the body to come out with results, we can take action to perform healing on our own mind. And wait for the mind's influence on the body to perhaps heal the body too. This is one article that talks about this: "Heal Thyself - You Are Your Own Healer".]

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