Out of Order

Category: Epidemiology

  • At Risk of Being Complete Nonsense

    I see things like this: “Ataxia can strike anyone at any time regardless of age, gender, or race.” Misleading expressions like this are common for ataxia—blurring the lines between spinocerebellar ataxia (SCA) and other ataxia forms—and Huntington’s disease (HD). This line of reasoning is ridiculous for dominantly inherited genetic diseases such as SCA and HD.…

  • An Ounce of Prevention?

    How much impact would SCA prevention make? I have developed a web-based tool to help look at the question. DNA testing has been available up through SCA3 since 1995. I think this influenced some people’s approaches to family planning—at least, it did mine; I was tested in 1996. If you know the disease is genetic…

  • Rarity Again (Neurologists)

    As we know, though some deny it, the prevalence of spinocerebellar ataxia (SCA) is upwards of 5 per 100,000, or about 16,100 in the U.S. in 2015. Consider this: There are about 16,366 neurologists in the U.S.—about 5.1 per 100,000 (There are about 915,000 doctors in the U.S.—about 280 per 100,000) https://www.aan.com/PressRoom/home/PressRelease/1178 https://www.kff.org/other/state-indicator/total-active-physicians/ The prevalence…

  • Prevalence and Incidence of Rare Diseases

    I’ve now come close to doing something I thought was impossible in my first post, which is knowing where the prevalence of ataxia stands among a list of other rare diseases. I was drawn to this PDF because of the prevalence and incidence information it contains on 3,064 rare diseases, and I have made the…

  • Alternative Facts (Rarity, Part Two)

    I was diligently trying to understand the prevalence of ataxia compared to other diseases, and I didn’t expect to find numbers that were inflated by an order of magnitude. After I posted my article, I started noticing references to 150,000 (people in the U.S. with various kinds of ataxia), when in fact the high estimate…

  • Is There a Doctor in the House?

    I want to be generally well-informed about the disease that I have, but it turns out that’s not realistic—there are too many variations of it, what’s known about it is evolving and hard to keep up with, and my perspective changes as my symptoms worsen. Most of the information out there doesn’t apply to me,…

  • I’ll Take Mine Rare

    Ataxia is often described as a rare disease. For a long time, I presumed the word rare was the casual use of an adjective, but it turns out that rare disease is a specific term that’s been around for many years. https://en.wikipedia.org/wiki/Rare_disease In U.S. law, a rare disease is a disease that affects less than…