Farrah Fawcett

I ( along with 9 million others) recently watched the Farrah Fawcett documentary, “Farrah’s Story”. She and her best friend Alana Hamilton documented her continuing fight with anal cancer. Her vivid and honest portrayal of the battle between a sweet soul and a beast of a disease was heartbreaking to watch. But, it brought to light the limited research and treatment currently available for the disease. Great strides are being made regularly to find treatments and cures for a variety of cancers and other diseases. But, many people find themselves seeking alternative treatment in other countries. I started thinking of anal cancer as an orphan disease and it nudged me to re-post my Orphan blog from July 2008. I hope you don't mind my re-posting. I certainly think anal cancer needs to be on the orphan list too, don't you?
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My prayers are with Farrah and all of her family and friends, as well as all of those who continue to fight against diseases that find their way into unsuspecting bodies.

Fight hard, stay positive and hold tight to hope!

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”. 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”. Polycythemia Vera happens to be the disease I have been undergoing successful treatment for over the past three years. 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!


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