Hemochromatosis patients can donate their blood rather than having it discarded | Hacker News Reader

Hemochromatosis patients can donate their blood rather than having it discarded

medicalxpress.com

18 pointsPaulHoule15 comments

I have HH and donate regularly with Vitalant, who has a monopoly on donations in Colorado. When I was originally diagnosed 20+ years ago, I had a prescription and they discarded the blood. After some research I decided to monitor my own iron levels and decide myself when to donate. Without a prescription, they are able to use the blood.

I am newly diagnosed with HH. How do you monitor your ferritin levels?

Out of curiosity since it’s not mentioned in the article, but what would receiving blood with a high iron content implicate? Is it something generally tolerable by someone without the condition as a 1 time transfusion? Would you have to mix blood to get the average hemoglobin iron content to some target level? I assume your body can handle the spike in iron and slowly bring you back to your body’s normal level.

If so, wow! Honestly who would say “no” to donation? If I had this disease and someone was just tipping my blood into the dirt every 12months when it could be helping people, I would actually be pissed that no one gave me the choice before.

Not an expert, but the donating (and/or bloodletting) is scheduled frequently enough to keep their iron from deviating too high above normal, and someone receiving a transfusion is typically going to be low on blood. Put 'em together, and I'd be surprised if a hemochromatosis transfusion could be a problem for anyone who doesn't themselves have hemochromatosis.

But yeah, this does seem like a really mutually beneficial arrangement. They need to lose some blood either way, might as well put it to use.

I imagine it might be actually useful for patients that are anemic with all that extra iron. But it seems from this link that donated blood is processed and separated into standard units so many multiple donor blood is mixed together.

https://www.redcrossblood.org/donate-blood/blood-donation-pr...

They don't mix it. Blood isn't interchangeable, as they explain on that link they sometimes need to destroy individual donations after separation if tests find a problem (e.g. you unknowingly have HIV) so if they were mixing the blood they'd need to destroy far more when this happens. Perhaps more importantly match checks can't work effectively except on a single donation. If you're a non-emergency transfusion patient you'll be cross matched with the intended blood, which means they know before transfusing that it's definitely compatible.

In fiction there are a handful of blood "types" and all the AB+ is identical, in reality it's more complicated than that, so if you've got enough time you always check and that means the donations must be from a single specific (even if anonymous) donor.

AFAIK, high iron in the blood isn't a problem for donatee. I think low iron in donated blood can be a problem, so most blood banks will do a quick screening and will turn donors away if your iron levels are too low.

The reason donations from known hemochromatosis patients have been turned away in the past was because of ethics. Blood and other medical donations are supposed to be of free will with no benefit for the donor. If you didn't know you had hemovhromatosis and gave blood regularly, you might never find out, and that would be fine. But once you know that giving blood helps you out, it's no longer of free will with no benefit for you.

Not all organizations have held this strict interpretation, and more and more blood organizations are accepting donations from people with this condition over time as generally they all would like more donations.

Huh, interesting to know! I can see the reasons for that rule pertaining to any medical donation generally, but in this case it does feel like a clear reason for an exception. (In my non-medical-ethics-trained mind.)

If my blood was withheld from people that needed it and instead destroyed, only BECAUSE I had a disease that benefits from bloodletting and does not affect the usefulness of my blood when transfused in any way... I think I would be rightfully angry by that.

The point isn't to cause you to be angry like that; that is an unfortunate side effect.

I believe the point is to stop predatory pressure to sell parts of your body because you need money or something and someone with more money or power than you wants it. We have to make laws like this to prevent some people from abusing inequality to create systems that put people in a position where they need to decide if they should sell some part of themselves.

In a perfect world people should be able to make clear, informed decisions about what to do with their body. In this world we have to set some baselines to prevent exploitation and permanent harm because we know SOMEONE will do it otherwise.

As an extreme example, imagine if, instead of stealing some money through gift cards, scammers got grandma to give up one of her kidneys.

Iron is used by the organism to make hemoglobin, the molecule that transports oxygen in blood.

Many recipients of blood transfusions need it because they lost a lot of blood: car accidents with open fractures, gunshots, etc. A single blood transfusion won't restore their blood levels to normal; it's just a temporary fix to keep them from dying. When they're "out of the woods", they restore the rest of their hemoglobin levels on their own, in time. It takes a lot of iron to do that, so the extra iron helps a lot.

The problem with extra iron happens when the patient can't fabricate their own hemoglobin, and as a consequence consume almost no iron. Some of these disorders require repeated transfusions; the patient can't live without them: thalasemia (severe forms), porphyrias, refractory anemias (MDS), aplastic anemia.

If the hemoglobin is low, the body's chemical mechanisms assume there's insufficient iron. The body then absorbs more iron from food and does it's best to store it and not lose it. In these cases, hemochromatosis appears even if blood transfusions they receive contain regular iron levels.

Oh yeah I know. I think you might have misread my question. Thinking more so about someone without this blood condition, getting a 1 time transfusion of blood (exactly like your example, after some serious trauma.) from someone with this condition. What are the implications of that? I assume the risks are low (especially compared to NOT getting an emergency blood transfusion), based on how the article talks about it, but it doesn't go into details.

No extra risks compared to a normal blood transfusion.

I actually have this, and I was encouraged by my doctor to donate blood through red cross every couple months rather than pay him to do it. I even have had red cross employees act shocked when they test my iron levels before donation then do the donation without saying anything further. This is surprising because I've never had anyone indicate I wasn't supposed to be doing it to begin with

Just to clarify, the Australian Red Cross is now allowing Hemochromatosis patients to donate plasma and is apparently the first in the world to do that.

Whole blood from hemochromatosis patients isn’t new. In Canada, at least, a buddy of mine was diagnosed about 10 years ago and “I just have to donate blood on a schedule” was the treatment he was given.

Definitely not new - as someone who was diagnosed with Haemochromatosis in 2017 - I was first prescribed phlebotomies until my general iron levels reached a level that my consultant was happy with.

Once I hit that level, I'm able to donate blood about twice a year (once every six months) to maintain (that, and a slightly changed diet to avoid high iron food)

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