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Sickle Cell, the Curse
Last Post 12/23/2022 01:18 PM by 79 pmooney. 10 Replies.
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79pmooney

Posts:3180

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12/22/2022 02:23 PM
Just read of NFL running back Ronnie Hillman dying of cancer related to his sickle at 31 years old.

https://katu.com/sports/content/former-denver-broncos-ronnie-hillman-running-back-dies-at-31-of#

Sickle cell hits close to home for me. I knew an Asian woman in my Seattle days with a condition that lead to sickle-cell like crises regularly, often taking her to the ER for blood transfusions. Initially she was diagnosed sickle cell which should have been near impossible as her family was from Korea and China. While that was the diagnosis, I went to Seattle hospital Virginia Mason's library, copied every page from their literature on sickle cell that I could read and understand and read it. Eye-opening.

What I read was that sickle cell was little studied (this was early '90s) in large part because it did not affect whites. That it is a genetic disorder that affects about 1 in 200 black. A far greater percentage of population than any natural genetic distribution would ever reach but on probably several occasions over the past thousand or so years, malaria has near wiped out the African population but sickle cell carriers in active crises had the blessing(?) of blood that didn't support the parasite.

Well, my friend didn't have sickle cell but instead a much rarer condition, also genetic with similar symptoms. similar oxygen starved blood and a susceptibility to cancers that love low oxygen conditions.

Years later, at the start of the Portland chapter of my life, I worked with a Black man with a 12 year old step daughter diagnosed with SC, No symptoms yet but all knew they were coming. Half a decade later I worked with him again and got regular updates on her, including the crises, hospital visits. (Neatest kid. I fell in love with her first sight when she was 12. Over the intermediate years, I'd get a Christmas card every year from her. She invited me to her college graduation. I went, didn't tell her - this was for her and family, not me. Found out later they saw me; that she was glad I was there.) I've lost contact with her. She's now around five years older than this man who just died. Need to get off my a**, call her dad and chase her down. That word I read a while ago - tell people you care about you love them or they may pass and never hear it. Way, way too real.
Dale

Posts:1767

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12/22/2022 03:19 PM
Thank you for posting that, Ben. I saw the news this morning.

My dad taught 7th grade science and loved to bring home science stuff from school to show us kids.
We did cool thing like typing our own blood (I'm AB+), looking through microscopes at all sorts of things, watching science movies, and learning loads of interesting things. It was during one of those evening science lessons that I learned about sickle cell anemia. It was a shock to a little kid to learn that diseases can be more prone in some ethnicities than others.

Fast forward quite a few years and my pre-planned funeral directions request that donations be made to a sickel cell anemia research and support foundation. Forget the flowers, donate to help someone living.
79pmooney

Posts:3180

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12/22/2022 06:43 PM
Thank you Dale. Can you pass on the foundation name?

Edit: B- here. I learned giving platelets. I'd given whole blood, put my name on a list of those willing to be called in an emergency and got a call at work asking if I could stop that afternoon at the Red Cross and donate at this new form of giving. Did so, rode to the Thursday evening club race, won it, rode home and gave every two weeks after that. (And never gave again on Thursday. Racing with bandages on both arms just didn't feel smart.)
longslowdistance

Posts:2881

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12/22/2022 07:45 PM
Great posts, thanks.
Just 2 cents worth to add to the conversation: I'll quibble that sickle cell has been neglected as a research topic. But the the racial issue is in general valid to some degree. If there is money to be made in helping sicklers, you can be sure the drug companies will be on it.
As for malignancy risk, yes and no. There is some compelling data for an increased risk of AML and maybe other leukemias in sicklers , but OTOH reduced risk for solid tumors. How does that make sense? Maybe the anemia and increased cell turnover increases the leukemia risk (boo). And maybe the weird blood vessels in solid tumors are fertile places for cells to "sickle" and clog (yay!).
79pmooney

Posts:3180

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12/22/2022 09:33 PM
lsd, if wealthy whites suffered sickle cell at one in 200 numbers, it would have been addressed a century ago. No, they might not have solved it but there would have been a wealth of info in that library 30 years ago. And every body would know about it, probably by 6th grade. I wouldn't be asking Dale for that foundation name. I'd have heard the commercials listening to football games.
longslowdistance

Posts:2881

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12/22/2022 09:55 PM
Hi All, medico here,
Just hoping to add light not heat. I truly admire Ben's engagement with this condition. Ben doesn't know me, but I am with him on this.

OK, flame suppression aside, why is there sickle cell anemia anywhere?? I mean really, it makes life miserable for the afflicted, and their ability to procreate is limited (selfish DNA rules the world).

Let me explain: Sickle cell is is a gene, inherited or not from both parents. If both pass on the gene, the child has full blown sickle cell anemia (homozygous), aka HbSS, not fun as Ben sympathetically related. BUT, if a child has one normal gene and one sickle gene, that child has "sickle cell trait" ( not anemia, that's both genes and not good). Trait provides substantial resistance to malaria. That's a trick as malaria is huge in parts of the world, kills zillions, and this can explain the sickle cell proliferation paradox.
Ben, Compare sickle cell to cystic fibrosis, aka CF, a condition with similar genetics, but afflicts white kids mostly but not exclusively it's just genetics not culture. Yours to chase down. You may lower your flamethrower a bit, or not, that is your call.
PS a bit of my professional life has been devoted to helping some of these kids. Not at all looking for affirmation, just hoping to make clear where I'm coming from. I admire enthusiasm such a Ben's. Thank you Ben.
longslowdistance

Posts:2881

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12/22/2022 10:29 PM
Ben, please check your stats. IIUC about 100k Americans or less have sickle cell anemia, far far less than 1 in 200, and it's true that most but not all have African skin, with all that implies in our society. Please check your stats, specifically distinguish trait from homozygous. Yes this this is complicated! I again applaud your support for the afflicted.
79pmooney

Posts:3180

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12/22/2022 11:09 PM
I'm a little off. Say 370 million Americans. 1 in 5 is Black. 74 million. That's 740 to every sickle cell case. I'm off by a factor of 4. Still, if this was a white disease, that'd be 47 cases in my home town. We'd all know or know of somebody. And anybody in crisis would receive appropriate care and drugs.

And on that note, yes I am passionate. That young Black woman was with her mom in a convenience store parking lot when her mom went into heart failure. She called (I presume 911). She'd visited hospitals as a patient so many times I bet she was as cool as a 20 something with her dying mom can be. But she was Black, sounded Black and was calling from a Black neighborhood 1 mile from Portland's best trauma unit, early evening on a Sunday. It took half an hour for the ambulance to get there. (10 minutes for you or me on bike, honoring lights.) Mom was brain dead by the time they arrived. (Her heart didn't stop. It was beating ineffectively.)
longslowdistance

Posts:2881

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12/23/2022 07:41 AM
Plenty of fair skinned people have it, mainly Hispanic
Dale

Posts:1767

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12/23/2022 11:51 AM
The science is interesting and in spite of my fathers teaching career I chose one less cerebral and went full in on the boat business. As I tell my wife, who is the one for surgery knocks you out and brings you back, "If you make a mistake someone dies, if I make a mistake someone gets a blue boat instead of a red one."

Anyway... one of the books I read discussed the sugar trade in the Caribbean and how the enslaved Africans didn't die off as fast as the whites or indigenous to the Americas did due to sickle cell trait that, as lsd stated, makes one more resistant to malaria and was a driver for the African slave trade.

LSD, thanks for the additional information and science lesson, and I was totally unaware it afflicted non-blacks as well.

Ben- I didn't specifically name a SCA foundation, just requested donations find their way to one of them.
79pmooney

Posts:3180

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12/23/2022 01:18 PM
Thanks guys. This is the forum where I learn a lot.

Dale, I'm reading two books that are both enlightening and sobering. The Color of Law and An Indigenous Peoples' History of the United States. First looks at how we codified segregation of neighborhoods throughout the country. The second is so damning of what we; the European settlers have done and are still doing that I won't even try to sum it up. The Color is a pretty dense read. Peoples' History goes a lot faster .

A while ago, I read that there was one place where slave owners did not use the malaria immunity of their slaves in an application where it would have been a major benefit. Clearing the bijous of Louisiana. No, rather than risk sickness to their expensive and valuable assets, they hired the Irish. Expendable and when they sickened and died, it freed the payroll for another hire. (I'm slowly learning where the Irish chip on the shoulder comes from.)
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