Friday, September 23, 2016

The power of zero

To give you some background, Duchenne's Disease is a form of muscular dystrophy. I don't see it at all because there's an MDA clinic across the street from my office, so I refer cases there.

Anyway, last night I was doing an online study, and it asked me how many Duchenne's patients I've seen in the last year. I said zero.

So the next question...



5 comments:

Andy Syms said...

I regularly get surveys where there is no appropriate answer to a question, eg 'None of the above'.

Yesterday I indicated that I don't smoke so the next question asked how much I smoked with answers ranging from '> 20 a day' down to 'I only smoke occasionally'. Facepalm!

Susan in Dallas said...

Ah, love the logic of very bad programming.

Anonymous said...

Not that this has anything to do with your post, but - a good friend of mine has a son who is 11. He has Duchenne's. He is already unable to walk and uses a power chair to get around. They were so excited last week when the FDA approved that drug that might help with Duchenne's, but then found out that the type of gene mutation that caused his Duchenne's does not respond at all to that particular drug. There is another drug, apparently, that shows promise, but it is not available in this country. It is, however, in use in the UK, but they can't get there. Sadly, time is running out. Horrible disease.

Library-Gryffon said...

It's so frustrating that a drug or treatment can be approved for use in Europe and used safely for years (if not decades) and the FDA will refuse to allow it in US. I remember when implantable contact lenses were first introduced in the US, they were only approved up to 4 diopters (I needed 12). They were using lenses up to something like 16 diopters in Europe (and had been for about a decade) because they are the same material and held in place using the same materials and techniques, so no eye doctor I knew understood why the FDA had imposed a correction limit.

Anonymous said...

When I first read the name of the post, it reminded me of the songs on Sesame Street or some other children's program and all that hype about one or two or three etc as a magic number, or Count von Count and his magic number of 34,969.

It's bad enough to have to respond to surveys with but one of a limited choices of answers, but I also disliked having to make a decision to answer one of the questions on a patient's electronic medical record template, until I found out I could just skip the question.

I am sorry to hear about the young boy, a pre-teen, with Duchenne's.

I wonder how the Zuckerberg's desire and monetary support of the anti-disease initiative will work out by the end of the 21st century.

 
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