How Rare Are Rare Diseases?

Remember how angry you were when you got chicken pox in college—how stupid you thought it was that you had to get it at that time of your life when people actually liked you? Remember how you thought, “damn, I must be the only person in the world to get this in college.” Well, no, you weren’t and college chicken pox isn’t exactly part of the tiny, unwelcome band of rare diseases.

Compared to, say, Ribose-5-Phosphate Isomerase Deficiency, your college chicken pox is about as unusual as sand at the beach. The aforementioned is the king of rare diseases as there is only one person in the world diagnosed with the illness. Of course, not all rare diseases have only one single recipient—that would be too weird, and tragic.

On the whole, a rare disease is called as such when they affect only the tiniest percentage of the population. Most of these diseases are genetic, meaning, unless your parents are advocates for pre-natal genetic screening it’s pretty much a game of Russian roulette. Also, this implies that if you get a rare disease, you’re likely to have it at any stage of your life.

Rare Diseases

To narrow down the stages of your life in which rare diseases can track you down, I’ll give you an estimate. Most rare diseases manifest themselves before the age of five; in fact, it has been estimate that 30 percent of people with this kind of disorder will die before their fifth birthday. That, while heartbreaking, may also placate your hypochondriac soul.

The oddest thing about rare diseases though, is that there is that the definition for it can only be determined depending on what part of the world that you are. Some measurements for rarity also take only the number of people affected into account. Some designations, on the other hand, include treatability and the gravity of the disease itself.

eurordis rare diseases

In the United States, the definition of rare diseases in the Rare Disease Act of 2002 is strictly based on occurrence alone. In numeric terms, if the syndrome affects 1 in 1,500 people (or less than 200,000) people in the United States, it may be qualified as a scarce ailment. This definition is related to that of The Orphan Drug Act of 1983, a bill that was written and passed to promote research and funding towards cures of rare diseases.

In Europe, however, rare diseases are classified a critical and chronically incapacitating with a low frequency rate, so much so that special efforts are needed to combat them. The frequency rate has now been taken to mean 1 in 2,500 people. Also, if the disease is not particularly debilitating or grave (or even sufficiently dealt with), it is excluded from the definition.

Check Rare Diseases

In Japan, rare diseases are defined as a disorder that happens to less than 50,000 people (or about 1 in 2,500 patients). The opinions of medical publications are also divided on the subject matter, with answers ranging from 1 in 1,000 to 1 in 200,000. As you can see, it is difficult to pinpoint the exact statistic—but the numbers will always speak for themselves.

Rare diseases usually are genetic, therefore they are categorized as chronic. Other rare diseases result from infections and allergies or stem from disintegrative and propagative sources. Classification of an illness’ infrequency additionally depends on the population being studied—for example, cancer is a commonality in adults, but is atypical in children.

In conclusion, rare diseases are based on a variety of things but it is the figures that truly count in the description. So, no, college-onset chicken pox is not that rare, genius. I had three friends that had that just this month.