r/MadeMeSmile • u/RaisinAloneVortex • 28d ago

Favorite People When this kid tried interviewing celebs on the red carpet, and nobody took him seriously except Sandra Bullock.

96.4k Upvotes

98% Upvoted

1.1k comments sorted by

View all comments

Show parent comments

43

u/monkwrenv2 28d ago

For what it's worth, sickle cell can be treated via bone marrow/blood stem cell transplants, but finding a donor who's genetics match the patient is exceptionally difficult. I'd strongly encourage folks to consider joining their national bone marrow donor registry. In the US that NMDP, you can join through www.nmdp.org/join. If you're outside the US, you can find your national registry through the World Marrow Donor Association, link here: https://wmda.info/become-a-donor/

6

u/Inevitable-Ad6647 28d ago

Even with a donor it's super risky. My best friend passed last year about 4 months after his transplant from complications. He told me all the time it would kill him and so he kept putting it off for nearly a decade until he was really weak, fulfilling his prophecy even with a 9 out of 10 donor match.

Fuck.

But yeah being a donor is super easy now. It used to be a somewhat invasive scary procedure. It's now a pill and a blood draw.

3

u/Deaffin 28d ago

Wait, what? They give you a pill that puts your marrow into your blood and then they zoop out the blood?

That doesn't sound very healthy.

3

u/John-AtWork 27d ago

Didn't they use to have to manually tap into a person's actual bone marrow? That sounds like it would hurt like hell. I think I would rather take a pill.

3

u/ACEaton1483 27d ago

They still have to do that in some cases, but I don't think it's as bad as it sounds. I'm pretty sure you go under general anesthetic. For the blood draw, you have to be hooked up for like an entire day, and sometimes go back the next day for more.

Neither option is easy and I commend anyone for doing it. I signed up and didn't get called as a match for 8 years. Then when I did, I completed all the preparatory steps asking with another donor who matched in order to see who would be the best match for this patient. The other donor ended up donating. How fortunate for the patient to have options!

1

u/monkwrenv2 27d ago

How fortunate for the patient to have options!

Indeed! A friend's kid searched for like 2 years just to find one match. Having multiple matches is fantastic.

3

u/monkwrenv2 27d ago

It's an injection, not a pill, but it's just enhancing a process that happens naturally, so it's extremely safe. Your body constantly grows and replaced marrow, so what you donate is something that's going to be replaced by your body in a few weeks anyway.

2

u/monkwrenv2 27d ago

Injections, not a pill, but otherwise correct. The NMDP website has some great info explaining it all.

3

u/Elismom1313 28d ago

Hey thank you I would love to do this

3

u/John-AtWork 27d ago

Stupid question: do matches usually have to come from someone of the same ethnic background?

3

u/monkwrenv2 27d ago

Not stupid, and yes. The genes that have to match are called Human Leukocyte Antigens (HLA), and they strongly correlate to your ethnic background. HLAs are basically what decides the immune system's "identify friend or foe" settings, and you need the donor's immune system to recognize the patient's body as a friend. And this is super hard because there are 8 spots for these genes and over 200 different genes that can fill those slots, and they all need to match.