- There are well-known diseases such as diabetes, cancer or arthritis. And then there are rare diseases in which the names alone could take up a whole line. Try saying trimethylaminuria (TMAU) three times. TMAU, although reportedly not fatal, can be crippling due to extremely unpleasant symptoms like foul breath and body odor due to the body’s lack of ability to break down a certain common chemical found in food.
- Not a problem you say? Try being a nine-year-old kid that stinks to high heaven while going to public school. Not fun. And yes, this condition affects young and old. There is no cure.
Maybe you’re one of many who like to look at shows about strange disorders and diseases. We as humans have a never-tiring fascination of strange medical conditions that people may develop or are born with. I can remember watching a show where a young man was growing tree-like warts all over his body. Another time there was a lady on a program whose legs were so swollen that movement was almost impossible. Both of these conditions baffled the medical community. Myself, I was stunned to learn of such ailments.
But it wasn’t until I was personally touched by how rare disease can alter your life that I learned that you not only should feel something, but should do something as well. That’s why Rare Disease Day, February 28, 2014, is so important. The US Rare Disease Day website states:
“Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year. In 2014, it will be observed on February 28th. In the U.S., any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases. Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.”
Anyone can be involved in Rare Disease Day and there are many suggested activities. The day has been established as a grassroots advocacy day and we encourage everyone to participate in some way!
This website focuses on Rare Disease Day activities in the U.S. To learn what’s happening around the world, go to the global Rare Disease Day website at rarediseaseday.org.”
If you are suffering with a rare disorder or know someone who is, then this event was created for you. Additionally, for those who are moved to do something and even if you can’t do much, just do what you can. NORD, the National Organization of Rare Diseases, will accept donations as low as a dollar. Hey, it all adds up.
Remember, Alone We are Rare. Together We are Strong.