Rare Disease Awareness Day is celebrated on Leap Years, specifically on February 29, around the world in an effort to bring awareness to the orphan diseases that are often overlooked and unheard of due to their rarity. Eurodis coordinates the event to bring awareness to the forgotten diseases, hoping to breathe new life into their research and work toward a cure for future generations that might be stricken with such diseases as Progeria, Batten’s Disease, and Pseudomyxoma adenocarcinoma.
Although officially celebrated on the last day of February, Rare Disease Awareness Day is especially prominent on February 29, the rare extra day of the year that only occurs during leap year.
A rare disease is defined as “any disorder that affects a small percentage of the population,” according to Rare Disease Day. However, despite being rare, the plethora of orphan diseases out there make them, as a whole, all too common to ignore. The theme for Rare Disease Day 201 is “Patient Voice,” which represents the role that the carriers of the rare diseased play in bringing awareness to their conditions and the potential for a cure.
The individuals that suffer from rare diseases and their families have become the most influential figures in rare disease awareness. Their dedication to finding a cure has ensured that they are the experts of the the rare disease they suffer from and allows them to fight for relief in future sufferers.
Audrey Hepburn suffered from Pseudomyxoma adenocarcinoma until her life ended, resulting in her son carrying on her legacy to bring awareness to her rare disease.
Tyler Allman, of South Bend, suffers from Batten’s Disease, a rare neurological disorder that is fatal to the individual that suffers from it. Individuals that suffer from Batten’s Disease eventually become “blind, bedridden, and demented,” according to the National Institute of Neurological Disorders and Stroke.
Tyler’s story has been shared by local television stations, such as WSJV Fox 28. He has been described as a normal child that loved to play sports, but now is limited to living his final days in a wheelchair. His mother, Heather Allman, thanks the community for fighting alongside her son, but knows the miracle breakthrough she prays for every night is unlikely to come.
“We know that someday we’re going to have to bury our own child. So that’s probably the toughest reality right now.”
Despite his mortal condition, Tyler still attends school and has friends just like any normal child. On Monday, his classmates plan to wear shirts in his honor to bring further awareness to his condition.
The Huffington Post shared that many orphan diseases have been ignored since they only impact a minimal number of individuals, therefore research into each one may not receive the necessary funding to continue. However, with the endorsement and awareness brought by their sufferers, some who have become celebrities in their own right, future research is looking much brighter each and every year.
The Huffington Post also shared that there are nearly 7,000 rare diseases with only 4 percent that have a treatment that works, or helps the sufferer. A total of 10 percent of the general population, which equates to approximately 30 million people, suffer from rare diseases. 4.5 million of those people aren’t expected to live past 5-years-old. The numbers show the vast impact that rare diseases have across the planet. Researching and finding cures for the rare diseases have the potential to find cures for many other conditions, some of which are quite common and in need of a cure.
Adalia Rose, a young girl with Progeria, has become an internet sensation with her cute and funny videos showing that despite her condition she can still be a normal little girl. She, along with a handful of others, have brought a distinct awareness to Progeria and have increased interest in conducting further research toward a cure.
[Image via Yulia Buchatskaya/Shutterstock]