Amy Mezni via Crowdrise
January 16, 2012
BENEFITING: National Organization for Rare Disorders, Inc.
EVENT DATE: Feb 29, 2012
In honor of Rare Disease Day, February 29th, 2012, I am creating this fundraiser to not only raise money for NORD (National Organization for Rare Disorders) but to also raise awareness for all of the orphan diseases.
What exactly is a rare disease?
A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.
A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
You may have heard of some rare diseases, but others are so rare that you may not hear of them until a friend or loved one is struck with one of them. The 6000 to 8000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.
People with a rare disease face many problems with getting a proper diagnosis, as medical knowledge of the disease is not widespread. Getting proper care is difficult because not much is known about the disease itself.
Personally, I was diagnosed with relapsing polychondritis and fibromyalgia in 2011. Both are autoimmune disorders. The RP is your own immune system attacking your cartilage and/or soft tissues. For many, the first sign of it is a swollen ear or nose. But this disorder can be vicious if untreated, attacking your trachea, airways, joints, and organs.
Estimates are that 3 in 1 million people develop RP. Because of that, it is difficult to study and learn about the disease. The disease can affect each person differently, so it is difficult for doctors to identify what is wrong - if they are knowledgeable of the disease at all. I have been blessed that my doctors did identify the RP, once I finally couldn't take it any more and went for treatment. For years I thought it was either an allergy or skin problem.
My sister was also diagnosed with a different rare autoimmune disorder. As autoimmune problems appear to run in my family's genes, I worry more for my children than for me. I do not want them to have to suffer through a debilitating disorder like this. That is why I am supporting NORD this Rare Disease Day.
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Thank you, Amy