Rare Disorders

We human creatures have evolved into the dominant mammalian species of our planet.  We’ve come about this way by accident and by determination to survive against all odds. Somehow, we’ve managed to win major struggles against infectious agents and genetic vulnerabilities.

It sometimes seems like the human race must battle countless diseases in order to justRareDiseaseDay-dr live our lives from day to day.  There are the so-called conventional or common diseases like chicken pox, influenza or a cold.  But once in awhile, doctors encounter mysterious, extremely uncommon ailments and health problems that are either acute or chronic.

How do healthcare providers define the term “rare disease”? Here in the U.S., a rare disorder or disease is one that afflicts less than 200,000 Americans at the same time.  Whereas, in Europe, it’s thought of as a ratio of 1 in 2,000 citizens. Elsewhere, the definitions are similar in that a condition affects a very small minority of people in a population.

Furthermore, the symptoms might mimick those of common diseases, or they might be completely unique to a particular illness.  The outward signs might even vary from patient to patient suffering from the same disorder.

Officials have estimated that there might be anywhere from around 6,000 to nearly 8,000 different rare diseases and disorders that affect human beings. In addition, about half of the rare conditions exclusively affect children.

Frequently there are no cures for a particular rare disease and possibly only ineffective treatments for symptoms. These factors cause pain, suffering, great financial expense for the victims along with their families and friends.

How is humanity to cope with the diseases and the effects?  It’s important to practice a more comprehensive approach with the implementation of skillful, compassionate global and national healthcare practices and policies.  The Internet is helping with more sharing of scientific and clinical research information.  All of these elements help in diagnosis and treatment of many rare diseases and disorders.

The problem is, that there are so many different sorts of disorders.  Some are just now being discovered and some are newly evolving from microbial and environmental factors.
RareDiseaseDay-2013

To raise awareness and action about rare disorders and diseases, many nations observe Rare Disease Day on the last day of February.  The first commemoration took place in the European Union in 2008 as the European Organization For Rare Diseases, EURORDIS,  decided to dedicate a day to the largely unknown diseases and disorders because there are already special days for other conditions like cancer, AIDS, MS, and so forth. In the United States, the first Rare Disease Day kicked off in 2009 due to the efforts of the National Organization for Rare Diseases, NORD.  In addition to the works of EURORDIS and NORD, various patient advocacy groups and non-profits have coordinated their efforts to observe today’s commemoration.

If you want to become involved or affiliated with other people who are concerned about rare disorders and diseases there are many resources available.  You can start here: http://www.rarediseases.org/

Ciao
1984a

The Blue Jay of Happiness knows that progress against rare diseases can be made by public involvement and scientific research.

About swabby429

An eclectic guy who likes to observe the world around him and comment about those observations.
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