February is a unique month; it is the shortest of the calendar year but definitely the longest of my life; to skim the surface (purposely omitting in-depth details on the pain, swelling and daily physical struggles) within the last 28 days I have celebrated the birth of my gran-mother (the silver lining), continued to grieve the deaths of my gran-father and former self, cried over the disappointment of yet another stumbling block in my quest for corrective hip surgery, joyfully reflected on or painfully agonized over – dependent on the hour of the day – the 2 years that have passed since my diagnosis with Guillain-Barré Syndrome (GBS) as well as tried and failed to rationalize why the anniversary of these tragedies seem like I am reliving the moment.
Wow! That is a loaded paragraph to be obsessed over later….
Plot Twist – Today’s post is centered on Rare Disease Day 2018. From its inauguration in 2008, Rare Disease Day (RDD) is celebrated on February 28th each year.
Although, there exist some variations in the definition, a rare disease is often referred to as a life-threatening, chronic and/or debilitating illness that has a high level of complexity but a low rate of occurrence only affecting a small portion of a population at any given time (i.e. less than 1 in every 200,000 people in USA versus less than 5 in 10,000 people in Europe).
There are between 6,000 – 7,000 existing rare diseases and at least 5 new diseases are recorded weekly in medical literature. Rare diseases can be the result of infections (bacterial or viral), environmental causes and allergies or are degenerative and proliferative but a staggering 80% of the cases identified have genetic origins.
Persistent problems associated with rare diseases include lack of scientific research and medical knowledge, confusion with the wide variations in symptoms among patients and mis-diagnosis. Worst yet is that approximately 95% of rare diseases do not have a cure or adequate treatment options at realistic healthcare cost.
The burden of sufferers of rare diseases can only be alleviated through awareness, involvement, research and advocacy. The activities and events associated with RDD are specifically geared towards engaging the public and decision makers to help make a difference.
February 28th, 2018: 755 days with Guillain-Barré Syndrome (GBS) and I am one of the 350 million people worldwide gravely affected by a rare disease and hoping that you will dare to be a champion for us.
*** I have always been unique; GBS has made me rare ***
