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My goddaughter (and her older brother) have sickle cell. Her parents have been hoping and praying for some development in this field for years now. It’ll still

My goddaughter (and her older brother) have sickle cell. Her parents have been hoping and praying for some development in this field for years now. It’ll still be a while before they can obtain this treatment in Canada, but suffice it to say, it’s likely to be cured in their lifetime. It is debilitating and affects a lot of their everyday life. I’m really happy this is progressing.

fnordpiglet 3y ago
For what it’s worth my grandfather researched sickle cell and found that l-citrulline supplementation greatly improves quality of life for people with sickle cell. Unfortunately sports supplementation and erectile dysfunction treatment was the more lucrative of his patents and he died before he could finish FDA approval work for treatment of sickle cell anemia (not a cure). As citrulline isn’t expensive no one was willing to pick up his research. He provided citrulline to his patients throughout his life as their quality of life improved dramatically as to be entirely normal. I don’t know that anyone kept track of them after his death, but his research into citrulline for other purposes such as erectile and exercise performance ensured that it’s widely available now. https://thescholarship.ecu.edu/handle/10342/3137 https://thescholarship.ecu.edu/handle/10342/3137 You can purchase it from many places but this manufacturer has a good reputation: BULKSUPPLEMENTS.COM L-Citrulline Malate 2:1 Powder - L Citrulline Malate Supplement, Citrulline Malate Powder - Unflavored & Gluten Free - 3g per Servings, 333 Servings, 1kg (2.2 lbs) https://a.co/d/fzNovRX https://a.co/d/fzNovRX Citrulline is extremely safe in any quantity. Any excess is urinated out.
- WhitneyLand 3y ago
  I think people are downvoting your answer incorrectly. Best I can tell that’s because you used the word SUPPLEMENTS in all caps which is reminiscent of spam email. However, while I can’t validate anything about your grandfather what you’re saying seems plausible and some papers have talked about it. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2594068 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2594068
  - fnordpiglet 3y ago
    Perhaps! That’s just the auto formatted text from an Amazon share link on iOS - no referral code in the link! His patents were exhaustively written and documented in medical textbook style (rather than legal robot style) further detailing the variety of uses of citrulline: https://patents.google.com/patent/US5874471A/en https://patents.google.com/patent/US5874471A/en The essence is arginine is crucial in the production of NO, which serves many functions of the body but it’s also a powerful vasoprotector. Sickle cell is popularly thought to cause anemia due to the cell shape not carrying enough oxygen, but in fact it’s due to the shape irritating the epithelial cells lining blood vessels, particularly small vessels and capillaries. This redirects the use of arginine in the body to repairing and protecting the blood vessels in the body. Citrulline is an intermediate non essential amino acid found in high concentration in watermelon seeds (hence the name). It survives the gut, unlike direct arginine ingestion, and converts readily to arginine in the kidneys (my grandfather was an expert in kidney function and pioneered kidney transplants in the 1950’s and 1969’s, his interest in sickle came late in his career in the 1990’s). He was also an expert in heart disease, and as a young man was a tenured professor of medicine at University of Kentucky, chair of cardiovascular research, and an endowed member of the Kentucky Heart Association. He left Kentucky to found the first regional hospital and medical school in eastern North Carolina, ECU, where he was the director for many years. He was a terror of grad students, never accepted outside grant money for any of his research, never worked with drug companies, and led the bioethical research boards at his medical school for most of his career. He earned the nickname Dr House for his remarkable ability to diagnose obscure diseases and conditions along with novel treatments using his encyclopedic knowledge of biochemistry and disease, as well as his often obnoxious personality. The university forced him to retire because he brought no funding and had an entire floor for his lab when he was in his late 70’s, so he tore out his garage and built a laboratory in its place where he spent the rest of his years self publishing new research. https://www.legacy.com/us/obituaries/reflector/name/william-waugh-obituary?id=21549647 https://www.legacy.com/us/obituaries/reflector/name/william-...
jnsie 3y ago
I know this will sounds like a random interneter virtue signaling or karma whoring...but I'm pulling for them buddy, truly!
- hiddencost 3y ago
  ... Who hurt you? You can say express your empathy and care without it being compromised.
  - electrondood 3y ago
    "virtue signaling" is typically used as a pejorative by people who are unable to experience empathy for others, or at least others who aren't like them. They assume, by projection, that it's disingenuous. (not a commentary on your parent comment)
    - Retric 3y ago
      Virtue signaling is a common thing and also used as a pejorative. What I find interesting is there is some cultural tension around how much to discourage such public displays. Donations can do good even if the gift giver is simply trying to improve their image. Ex: "Beware of practicing your piety before others in order to be seen by them; for then you have no reward from your Father in heaven. So whenever you give alms, do not sound a trumpet before you, as the hypocrites do in the synagogues and in the streets, so that they may be praised by others. Truly I tell you, they have received their reward.“ Notice how there’s zero implication that the behavior is negative and even an acknowledgment that doing so brings rewards, just the suggestion that it’s just not pious.
      - batch12 3y ago
        I think you're misunderstanding the verse you're quoting. The part you quoted basically says they already got their crappy reward and that's all they'll get. They won't be getting the good stuff. Don't be fake, do what's right even when nobody is looking.

fnordpiglet 3y ago

For what it’s worth my grandfather researched sickle cell and found that l-citrulline supplementation greatly improves quality of life for people with sickle cell. Unfortunately sports supplementation and erectile dysfunction treatment was the more lucrative of his patents and he died before he could finish FDA approval work for treatment of sickle cell anemia (not a cure). As citrulline isn’t expensive no one was willing to pick up his research. He provided citrulline to his patients throughout his life as their quality of life improved dramatically as to be entirely normal. I don’t know that anyone kept track of them after his death, but his research into citrulline for other purposes such as erectile and exercise performance ensured that it’s widely available now. https://thescholarship.ecu.edu/handle/10342/3137 https://thescholarship.ecu.edu/handle/10342/3137 You can purchase it from many places but this manufacturer has a good reputation: BULKSUPPLEMENTS.COM L-Citrulline Malate 2:1 Powder - L Citrulline Malate Supplement, Citrulline Malate Powder - Unflavored & Gluten Free - 3g per Servings, 333 Servings, 1kg (2.2 lbs) https://a.co/d/fzNovRX https://a.co/d/fzNovRX Citrulline is extremely safe in any quantity. Any excess is urinated out.

WhitneyLand 3y ago
I think people are downvoting your answer incorrectly. Best I can tell that’s because you used the word SUPPLEMENTS in all caps which is reminiscent of spam email. However, while I can’t validate anything about your grandfather what you’re saying seems plausible and some papers have talked about it. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2594068 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2594068
- fnordpiglet 3y ago
  Perhaps! That’s just the auto formatted text from an Amazon share link on iOS - no referral code in the link! His patents were exhaustively written and documented in medical textbook style (rather than legal robot style) further detailing the variety of uses of citrulline: https://patents.google.com/patent/US5874471A/en https://patents.google.com/patent/US5874471A/en The essence is arginine is crucial in the production of NO, which serves many functions of the body but it’s also a powerful vasoprotector. Sickle cell is popularly thought to cause anemia due to the cell shape not carrying enough oxygen, but in fact it’s due to the shape irritating the epithelial cells lining blood vessels, particularly small vessels and capillaries. This redirects the use of arginine in the body to repairing and protecting the blood vessels in the body. Citrulline is an intermediate non essential amino acid found in high concentration in watermelon seeds (hence the name). It survives the gut, unlike direct arginine ingestion, and converts readily to arginine in the kidneys (my grandfather was an expert in kidney function and pioneered kidney transplants in the 1950’s and 1969’s, his interest in sickle came late in his career in the 1990’s). He was also an expert in heart disease, and as a young man was a tenured professor of medicine at University of Kentucky, chair of cardiovascular research, and an endowed member of the Kentucky Heart Association. He left Kentucky to found the first regional hospital and medical school in eastern North Carolina, ECU, where he was the director for many years. He was a terror of grad students, never accepted outside grant money for any of his research, never worked with drug companies, and led the bioethical research boards at his medical school for most of his career. He earned the nickname Dr House for his remarkable ability to diagnose obscure diseases and conditions along with novel treatments using his encyclopedic knowledge of biochemistry and disease, as well as his often obnoxious personality. The university forced him to retire because he brought no funding and had an entire floor for his lab when he was in his late 70’s, so he tore out his garage and built a laboratory in its place where he spent the rest of his years self publishing new research. https://www.legacy.com/us/obituaries/reflector/name/william-waugh-obituary?id=21549647 https://www.legacy.com/us/obituaries/reflector/name/william-...

jnsie 3y ago

I know this will sounds like a random interneter virtue signaling or karma whoring...but I'm pulling for them buddy, truly!

hiddencost 3y ago
... Who hurt you? You can say express your empathy and care without it being compromised.
- electrondood 3y ago
  "virtue signaling" is typically used as a pejorative by people who are unable to experience empathy for others, or at least others who aren't like them. They assume, by projection, that it's disingenuous. (not a commentary on your parent comment)
  - Retric 3y ago
    Virtue signaling is a common thing and also used as a pejorative. What I find interesting is there is some cultural tension around how much to discourage such public displays. Donations can do good even if the gift giver is simply trying to improve their image. Ex: "Beware of practicing your piety before others in order to be seen by them; for then you have no reward from your Father in heaven. So whenever you give alms, do not sound a trumpet before you, as the hypocrites do in the synagogues and in the streets, so that they may be praised by others. Truly I tell you, they have received their reward.“ Notice how there’s zero implication that the behavior is negative and even an acknowledgment that doing so brings rewards, just the suggestion that it’s just not pious.
    - batch12 3y ago
      I think you're misunderstanding the verse you're quoting. The part you quoted basically says they already got their crappy reward and that's all they'll get. They won't be getting the good stuff. Don't be fake, do what's right even when nobody is looking.