3 ms·

I have a genetic disorder. That's why it occurs to me, though I edited it out because I get a lot of flak for "talking too much about myself" and then when I ed

I have a genetic disorder. That's why it occurs to me, though I edited it out because I get a lot of flak for "talking too much about myself" and then when I edit out stuff like that, I get replies like this one that seem to think it's some sort of ugly thing to say rather than genuine curiosity rooted in a smidgen of relevant information/experience. I looked into signing up to be a bone marrow donor when my corporate employer was giving some kind of incentive. I don't qualify. Period. You cannot tell by looking at me that my DNA is miscoded but it significantly impacts organ function, and not in a good way. My ID card doesn't state I have a genetic disorder.

onion2k 6y ago
Doctors test organs before using them. Obviously. Regardless of genetic disorders, the donor might have a disease that would kill the already-very-unhealthy-because-they-need-a-new-organ patient. They also test for compatibility with the patient. You can't just stick any organ in any person. Genetic disorders among donora is not a legitimate concern here.
- tediousdemise 6y ago
  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125622/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125622/ > On 7 February surgeon James Jaggers had almost completed the operation when he learnt that the organs came from a donor with type A blood, incompatible with Jesica's type O. The story became front page news. Jesica was kept on life support systems while a second transplant was sought—and, astonishingly, found. Despite the second transplant, Jesica died from irreversible brain damage on 22 February. Quite the testing they did there.
  - onion2k 6y ago
    Taking a single error and suggesting it's evidence of a wider problem is a fun game. Now compare how many transplants happen every day to how often this sort of mistake occurs. Humans are fallible and mistakes happen. It's a tragedy of course, but it is not evidence of a widespread problem.
    - pharmakom 6y ago
      Indeed. The fact it made front page news suggests it’s a rare occurrence, compared to say, traffic accidents.
- DoreenMichele 6y ago
  A quick google indicates they test for certain infections (in the US), not genetic disorders: https://www.cdc.gov/transplantsafety/protecting-patient/screening-testing.html https://www.cdc.gov/transplantsafety/protecting-patient/scre... It just so happens people with my condition receive a lot of organ transplants and the organs they receive then don't have the genetic defect. Not exactly a cure, but I'm pretty darn sure it would run the other way and if someone got one if my organs, they would have my genetic disorder in that organ. And they would likely not be happy campers. So I doubt your statement is entirely accurate. Edit: I will add that genetic testing takes time and organs aren't viable for transplant for very long. Transplant happens pretty quickly following death of the donor, so genetic testing is unlikely to enter the mix anytime soon, I think.
  - kaba0 6y ago
    I guess you do have some medical info on your condition, don’t you? They do check that and will exclude you in this case.
- madaxe_again 6y ago
  They’re supposed to. A good friend just died of hepatitis that came free with his liver, in the U.K. - and ironically, his father died of liver cancer brought on by hepatitis last year, that he was given with a blood transfusion in the 80’s. The U.K. does not have a good track record here. https://en.m.wikipedia.org/wiki/Contaminated_blood_scandal_in_the_United_Kingdom https://en.m.wikipedia.org/wiki/Contaminated_blood_scandal_i...

onion2k 6y ago

Doctors test organs before using them. Obviously. Regardless of genetic disorders, the donor might have a disease that would kill the already-very-unhealthy-because-they-need-a-new-organ patient. They also test for compatibility with the patient. You can't just stick any organ in any person. Genetic disorders among donora is not a legitimate concern here.

tediousdemise 6y ago
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125622/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125622/ > On 7 February surgeon James Jaggers had almost completed the operation when he learnt that the organs came from a donor with type A blood, incompatible with Jesica's type O. The story became front page news. Jesica was kept on life support systems while a second transplant was sought—and, astonishingly, found. Despite the second transplant, Jesica died from irreversible brain damage on 22 February. Quite the testing they did there.
- onion2k 6y ago
  Taking a single error and suggesting it's evidence of a wider problem is a fun game. Now compare how many transplants happen every day to how often this sort of mistake occurs. Humans are fallible and mistakes happen. It's a tragedy of course, but it is not evidence of a widespread problem.
  - pharmakom 6y ago
    Indeed. The fact it made front page news suggests it’s a rare occurrence, compared to say, traffic accidents.
DoreenMichele 6y ago
A quick google indicates they test for certain infections (in the US), not genetic disorders: https://www.cdc.gov/transplantsafety/protecting-patient/screening-testing.html https://www.cdc.gov/transplantsafety/protecting-patient/scre... It just so happens people with my condition receive a lot of organ transplants and the organs they receive then don't have the genetic defect. Not exactly a cure, but I'm pretty darn sure it would run the other way and if someone got one if my organs, they would have my genetic disorder in that organ. And they would likely not be happy campers. So I doubt your statement is entirely accurate. Edit: I will add that genetic testing takes time and organs aren't viable for transplant for very long. Transplant happens pretty quickly following death of the donor, so genetic testing is unlikely to enter the mix anytime soon, I think.
- kaba0 6y ago
  I guess you do have some medical info on your condition, don’t you? They do check that and will exclude you in this case.
madaxe_again 6y ago
They’re supposed to. A good friend just died of hepatitis that came free with his liver, in the U.K. - and ironically, his father died of liver cancer brought on by hepatitis last year, that he was given with a blood transfusion in the 80’s. The U.K. does not have a good track record here. https://en.m.wikipedia.org/wiki/Contaminated_blood_scandal_in_the_United_Kingdom https://en.m.wikipedia.org/wiki/Contaminated_blood_scandal_i...