What Society Thinks of as ‘ Rare ’
The past two weeks I conducted an unscientific survey. I asked random strangers what they first thought of when they heard the word “Rare.” I got the following answers:
Automobiles
Gemstones
Jewelry
Books
Mummies found in peat
Animals
Manuscripts
Records
Rugs
Furniture
Mirror twins
Meteorites
Aurora Borealis
Sheet lightning
Pyura chilensis
Musical instruments
Art
Coins
Sports memorabilia
Great restaurants
Intelligent people
People that smile
Good manners
Yes, some of the answers made me smile too. Notice their answers all equate value.
They also left me considering how many people actually think about rare diseases if they don’t affect them or someone they care about. It definitely is not their main “Rare” item of thought. Rare diseases take away value on every personal level to those of us even before we are diagnosed. Many times they even steal our perception of humanity and human rights.
In the US 30,000,000 people have rare diseases. That is 1 in 10 people. It takes 7.3 physicians for a patient to receive a correct diagnosis. It took me 51 experienced specialists to obtain my first rare disease diagnosis, and 1 additional specialists to diagnose and save me from imminent paraplegia and death. The time it takes to diagnosis a rare disease is 4.8 years out of a range of 0-20 years. It took me 4 years and 3 months to be diagnosed with geniculate neuralgia, then an additional year to be diagnosed with a major chiari malformation and destroyed cervical spine.
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Source: Society for Participatory Medicine - Category: Journals (General) Authors: Society for Participatory Medicine Staff Tags: Editorial Newsletter conflicting information diagnosis Health Costs rare disease statistics Rare Diseases what is a rare disease Source Type: news
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