February 29th is Rare Disease Day. It’s a globally recognized day to raise awareness for literally thousands of medical conditions which aren’t common among the general population. There are conferences, meetings, and sharing of stories to help bring to light what less than 10% of the entire world’s population has an issue with. For those who love their numbers, that’s about 7 thousand medical disorders spread out over slightly less than 740 million people and not evenly, either. Even distribution would mean a little over a 100,000 people with each condition and that’s just not the case. Yes, there could be that many with such a rare medical condition, sometimes even more. But sometimes, it’s less than 100 people in the entire world, and even occasionally less than a handful of people who have one of these uncommon health maladies.
Some of the conditions are obvious to the untrained eye, others not so much. Some make themselves known at birth, others kick in over time. What these folks have to live with day-to-day varies. Sometimes, their problems are mild, tolerable, possibly even treatable. Other times, the impact of the condition is severe, has little or no treatment available, and can alter an entire existence by its impact. Lifespans can be relatively normal, but often they’re shortened, certainly shorter than they or their loved ones expected and wanted.
As an individual with one of the later-onset rare diseases, I encourage you to join in, learn more, and support the efforts of Rare Disease Day to help all of those affected and to encourage research and treatment in the years to come.
Click here to read my rare disease story (to be posted on 2/29/16).
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