Today is Rare Disease Day, a day meant to raise awareness about rare diseases and how such diseases affect patients’ lives. The worldwide event launched in 2008, and last year more than 80 countries participated.
Raising awareness of rare diseases is important because, as the word “rare” suggests, these diseases are not common. When diseases or conditions are uncommon and affect smaller numbers of people, they often don’t get the attention that they so desperately need in order to raise money for research. When there is a lack of funding for research, steps toward finding a cure cannot be made.
A disease is considered rare in the United States when it affects fewer than 200,000 Americans at any given time. Some rare diseases affect very small numbers of people, while others may affect many more. It is estimated that 50 percent of diseases deemed rare affect children.
One of those children is my great nephew Justin. I’ve written about him before at HealthComU. Justin was diagnosed with Lennox-Gastaut Syndrome (LGS) when he was about 2 (he’s now 6). Less than 5 percent of cases of childhood epilepsy are classified as LGS. LGS is characterized by multiple seizure types (and the seizures are largely uncontrolled even with medication) and moderate to severe cognitive impairment. Currently, there is no cure for LGS. There’s also not much awareness about the condition, which is why a day like Rare Disease Day is needed (and it’s why I’m writing this post).
Last year, our family saw the effect of what can happen when something gets just a little bit of much needed attention. There’s been a fundraising page for Justin to help raise money for essential medical equipment, including a special chair that allows him to safely sit at a table and eat and a (very expensive) bed that keeps him safe at night. Although Justin’s family and friends have been more than generous with donations, there comes a point with any fundraising where it needs to expand beyond people the family knows.
I remember reading once that there is no strategy for making something go viral. Sometimes, for reasons that are not yet fully understood, some stories just seem to take off on social media and suddenly it seems like the whole world cares about this particular story. We needed something like that to happen. And then it did (although on a local, not national scale). Last fall, the Free Lance-Star wrote an article about Justin, and suddenly, those strangers we desperately needed to donate started to contribute. Enough money was raised, and Justin was able to get the specialty bed that now allows his parents some piece of mind at night.
Bottom line? It was awareness of his story that made a difference. As health communicators, it must be our mission to keep raising awareness of rare diseases so that more children like Justin can get the help that they deserve.