A Royal Pain
May 12, 2017 11:24 AM Subscribe
Everyone’s in your shit. Fifteen minutes of infusing means an hour of jack-off jokes. No one is meaning to be a dick, it’s just how we act at this age, but it can make infusing a pain in the ass.Why young men with hemophilia fall out of compliance with their medication schedules.
I had no idea that the treatment for hemophilia was so cumbersome. I had a couple of close friends with diabetes growing up, and their insulin injections were nowhere nearly so onerous.
Is there something about the medication to control hemophilia that wouldn't work with an insulin pump style setup for continual injection? Or is that considered too invasive, or what?
posted by sotonohito at 12:59 PM on May 12, 2017
Is there something about the medication to control hemophilia that wouldn't work with an insulin pump style setup for continual injection? Or is that considered too invasive, or what?
posted by sotonohito at 12:59 PM on May 12, 2017
The article makes it seem like this is primarily a white disease. The Wikipedia article reinforces this idea. I hunted up this map of hemophilia distribution:
http://www.who.int/genomics/public/Maphaemoglobin.pdf
It looks like it is primarily a central African and central American disease.
posted by metasluggo at 1:14 PM on May 12, 2017 [2 favorites]
http://www.who.int/genomics/public/Maphaemoglobin.pdf
It looks like it is primarily a central African and central American disease.
posted by metasluggo at 1:14 PM on May 12, 2017 [2 favorites]
Mod note: Couple comments removed, let's focus on the content of the article and what there is of interest there, and not just jump to the problematizing/critical takes bit.
posted by cortex (staff) at 1:26 PM on May 12, 2017 [8 favorites]
posted by cortex (staff) at 1:26 PM on May 12, 2017 [8 favorites]
I hunted up this map of hemophilia distribution:
http://www.who.int/genomics/public/Maphaemoglobin.pdf
It looks like it is primarily a central African and central American disease.
That map is of haemoglobin disorders, which includes sickle-cell anemia, which affects thousands of times as many people as hemophilia.
posted by Etrigan at 1:28 PM on May 12, 2017 [28 favorites]
http://www.who.int/genomics/public/Maphaemoglobin.pdf
It looks like it is primarily a central African and central American disease.
That map is of haemoglobin disorders, which includes sickle-cell anemia, which affects thousands of times as many people as hemophilia.
posted by Etrigan at 1:28 PM on May 12, 2017 [28 favorites]
Interesting article.
Hemophilia affects all ethnic groups incidentally. The largest numbers of cases are thought to be in India, Bangladesh, Indonesia and China - although many cases there might not be diagnosed.
I think haemophilia treatment attracts federal funding in the U.S., so I'm not sure that this should be framed as a project to help rich white college kids. Haemophilia doesn't discriminate based on wealth or social class. No treatment strategy should either.
posted by 1head2arms2legs at 1:32 PM on May 12, 2017 [4 favorites]
Hemophilia affects all ethnic groups incidentally. The largest numbers of cases are thought to be in India, Bangladesh, Indonesia and China - although many cases there might not be diagnosed.
I think haemophilia treatment attracts federal funding in the U.S., so I'm not sure that this should be framed as a project to help rich white college kids. Haemophilia doesn't discriminate based on wealth or social class. No treatment strategy should either.
posted by 1head2arms2legs at 1:32 PM on May 12, 2017 [4 favorites]
I loved the conclusion in which they figured out how to present qualitative research to the company sponsoring it. (Yes, my background is in qualitative research). Medicine, like education, masquerades as a hard-science process but because it takes place in the rich, complex, confusing, muddled world of human beings never actually works according to the numbers, and rich description, cases, and in-depth story telling are often much more effective ways of capturing what's actually going on There are just too many variables in real-life situations to rely on the the classic experiment for all your data.
posted by Peach at 2:00 PM on May 12, 2017 [8 favorites]
posted by Peach at 2:00 PM on May 12, 2017 [8 favorites]
The description of these young guys just out on their own, living in communal situations, letting their medical regimen slip is familiar. I had a friend with an insulin pump at that age and he got himself into some bad situations a couple times, enough that his S.O. felt the need to vent to friends.
The article certainly jives with my gut level take on it. Leaving the nest inspires testing limits, and crossing lines. Having been told that things like sex, drink, and drugs are risky, you'll still find many young people trying as many kinds and ways as they can. That seems pretty standard for anyone used to the kid-gloves and tight cotton swaddling that passes for normal today, let alone young men who've been told they're fragile and never had the chance to prove themselves in traditional macho pursuits.
I'm glad the authors found an effective way to tell this story to the moneyed decision makers.
posted by cult_url_bias at 3:41 PM on May 12, 2017 [3 favorites]
The article certainly jives with my gut level take on it. Leaving the nest inspires testing limits, and crossing lines. Having been told that things like sex, drink, and drugs are risky, you'll still find many young people trying as many kinds and ways as they can. That seems pretty standard for anyone used to the kid-gloves and tight cotton swaddling that passes for normal today, let alone young men who've been told they're fragile and never had the chance to prove themselves in traditional macho pursuits.
I'm glad the authors found an effective way to tell this story to the moneyed decision makers.
posted by cult_url_bias at 3:41 PM on May 12, 2017 [3 favorites]
This is great! Thank you for sharing this!
posted by Made of Star Stuff at 12:50 PM on May 13, 2017
posted by Made of Star Stuff at 12:50 PM on May 13, 2017
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