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Jul 20 2008

Adopt An Orphan

Orphan, this word probably conjures up thoughts of little red headed girls singing tomorrow. Or a poor little urchin who says, “please sir may I have some more?” But, let me introduce you to a different type of orphan; “Orphan Diseases”. Orphan diseases are a group of rare diseases that are sometimes neglected, unloved, and often unknown diseases plaguing millions of people across the nation.

The Medical Dictionary defines “Orphan Disease” as:” A disease which has not been “adopted” by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it”.  As of this post there are approximately 5000 orphan diseases in our country. Some of which are as familiar as Cystic Fibrosis, some much less familiar like “Polycythemia Vera”. * see note below post Polycythemia Vera happens to be the disease I have been undergoing successful treatment for over the past three years. In addition I have several other medical issues. This is not a poor little me post, Giggle…..According to the National Institute of Health (NIH) 25 million Americans suffer from an orphan disease. For every orphan disease, treatment is needed, drugs may be required and understanding is necessary.

When someone is diagnosed with an orphan disease or condition, they most likely have been through a myriad of tests and false diagnosis for long periods of time. Orphan diseases can be difficult to diagnose and treat. Symptoms of an orphan disease can, at many times, be similar to much more common problems. This can cause treatment to be misguided with only some symptoms being addressed or treated. Having a rare/orphaned or less commonly identified disease can sometimes mean a long period of time must pass before an accurate diagnosis can be reached. This often causes the patient a great deal or emotional turmoil and possibly physical suffering. Some patients may even question whether their symptoms are legitimate, as frequent trips to the doctor can often lead them to believe they are hypochondriacs. Once a patient has been diagnosed with an orphan disease or condition, finding support and adequate pharmaceuticals can be a challenge. Many pharmaceutical companies do not spend time or funds creating orphan drugs. However, in 1983 The US Orphan Drug Act offered tax incentives for clinical trials, as well as a minimum of seven years marketing exclusively for drugs manufactured for rare diseases.

There are far too many Orphan diseases and conditions for me to list. The next time you’re considering donating time or money to a charitable cause, perhaps you’ll consider adopting an orphan disease. For a list of rare (orphaned) diseases you can go to: http://rarediseases.org/

Knowledge is power! Please let me know if you have any questions. Hugs, Katherine

*Polycythemia vera is a blood disorder in which your bone marrow makes too many red blood cells. Polycythemia vera — also called primary polycythemia m or P V or p Vera— is rare and usually develops slowly. Without treatment, polycythemia vera can be fatal. However, with proper medical care and ongoing treatments, leukemia can be avoided and a relatively “normal” life can be obtained.

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