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Life after sickle cell disease: A seven-year-old girl was cured of the disease thanks to her younger sister

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The Cole family

Today is World Sickle Cell Anemia Day. International Awareness Day is observed yearly to increase public awareness and understanding of sickle cell disease and the challenges faced by patients, their families and caregivers. According to CDC, Sickle cell disease (SCD) affects roughly 100,000 people in the United States; over 90% are Black or non-Hispanic African Americans. The estimated life expectancy of individuals with SCD in the United States is greater than 20 years shorter than the expected average. Sickle cell disease is an inherited blood disorder that affects red blood cells. In individuals with sickle cell disease, red blood cells contain mainly hemoglobin S, an abnormal type of hemoglobin.

Sometimes these red blood cells grow to be sickle-shaped (crescent-shaped) and have difficulty passing through small blood vessels. When sickle cells block small blood vessels, less blood can reach that part of the body. Tissue that doesn’t receive normal blood flow eventually becomes damaged. However, in December 2023, the FDA approved a brand new treatment for sickle cell disease. The treatment known as Casgevy and is the first drug approved in the United States to use CRISPR, a gene-editing tool from Vertex Pharmaceuticals and CRISPR Therapeutics. In May 2024, a 12-year-old black boy, Kendric Cromer, suffered from debilitating pain sickle cell anemiabecame the first patient in the United States to undergo the newly approved gene therapy.

Sickle cell disease has no specific age and affects children like Cali Cole, who was born with the disease and was miraculously cured at the age of 4 with the help of her younger sister, who’s now 4. Kendra Cole shared with ESSENCE that her daughter Cali was born with sickle cell disease and received a bone marrow transplant on April 1, 2021, at the age of 4, which cured her of sickle cell disease thanks to stem cells from her 18-month-old child. -older sister Reign (whom I gave birth to after a year-long in vitro fertilization process). A family of five, Kendra, her husband, Lord Cole, and their three children (Cali, Reign, and Valor), have banded together to tackle the chronology of medical events surrounding sickle cell disease. In 2016, Kendra and Lord began family planning, knowing they wanted to expand their family. While planning their family, they decided to participate in genetic testing, during which Kendra learned that she had the sickle cell trait.

Life after sickle cell disease: A seven-year-old girl was cured of the disease thanks to her younger sister

In 2017, their first child, Cali, was born, and the family medical team at ul Lurie Children’s HospitalIn Chicago, Illinois, I informed them that Cali had sickle cell disease, which had been diagnosed during newborn screening. From 2017 to 2021, Cali experienced the following complications due to sickle cell disease, which include: splenic sequestration, multiple pain crises, dactylitis, acute chest syndrome, extreme constipation, kidney damage, and abnormal TCD brain scan results. In late 2017, the Cole family frantically checked the Be the Match bone marrow registry for potential matches and didn’t find one, in order that they decided to try one other baby through in vitro fertilization to see if it is perhaps a compatible bone marrow match. In 2018, Kendra began the IVF process again, and in 2019, Reign was born. In 2021, the Cole family selected to pursue a bone marrow transplant through a stem cell donation from Reign. Although Reign and Valor don’t suffer from sickle cell anemia, they’re susceptible to the trait.

Life after sickle cell disease: A seven-year-old girl was cured of the disease thanks to her younger sister

Although Cali is now three years post-transplant with none complications and resides a joyful, healthy, sickle cell-free life, her family remembers the toll that sickle cell disease took on all of them. We spoke with Kendra to understand the impact that sickle cell disease has had on her, her husband, and her children.

Gist: Can you discuss your experience as a caregiver?

Kendra Cole: There were many moments with ups and downs. You know, every parent who has a baby loves them with every fiber of their being. At the same time, I felt an enormous sense of guilt that I didn’t know my character trait. I often thought to myself. I feel there have been persistently during those first 4 years of her life that I felt like I was in a bit of survival mode. I would not allow myself to be completely defenseless in front of my daughter as her mother because I was really, really scared. But there have been so many days in the hospital where I had to placed on a brave face, stay calm and make difficult decisions in an emotional atmosphere.

How can we increase the number of sickle cell disease in our community?

Sickle cell disease is an inherited blood disorder, so it is not something you may see. And pain is usually subjective, right? So it’s painful for one person and should or will not be as painful for another person.

Can you mention the importance of gene therapy?

I was enthusiastic about many recent developments, especially gene therapy. Gene therapy represents an enormous advance in the treatment and potential for a cure for sickle cell disease, and there hasn’t been much movement on this issue in years.

How do you proceed to spread awareness?

I proceed to be energetic in my local chapter of the Illinois Sickle Cell Association, whether through a parent group or through our annual awareness walk. I also contacted several parents whose children want to undergo a bone marrow transplant. I connected with many families and easily offered them our story, support and connection.

This article was originally published on : www.essence.com
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Health and Wellness

Jury awarded $310 million to parents of teenager who died after falling on a ride at Florida amusement park – Essence

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Sun Sentinel/Getty Images

The family of Tire Sampson, the 14-yr-old who tragically died on an amusement park ride in Orlando, Florida, in 2022, has been awarded $310 million in a civil lawsuit.

Tire, who was visiting ICON Park along with his family on March 24, 2022, fell from the FreeFall drop tower. Although he was taken to a nearby hospital, he didn’t survive his injuries.

Now, greater than two years later, a jury has held the vehicle manufacturer, Austria-based Funtime Handels, responsible for the accident and awarded the Tire family $310 million. According to reports from local news stations WFTV AND KSDKthe jury reached its verdict after about an hour of deliberation.

Tyre’s parents will each receive $155 million, according to attorney spokesman Michael Haggard.

Attorneys Ben Crump and Natalie Jackson, who represented Tyre’s family, shared their thoughts on this landmark decision via X (formerly Twitter). “This ruling is a step forward in holding corporations accountable for the safety of their products,” they said in a statement.

Lawyers stressed that Tyre’s death was attributable to “gross negligence and a failure to put safety before profits.” They added that the ride’s manufacturer had “neglected its duty to protect passengers” and that the substantial award ensured it could “face the consequences of its decisions.”

Crump and Jackson said they hope the result will encourage change throughout the theme park industry. “We hope this will spur the entire industry to enforce more stringent safety measures,” they said. “Tire heritage will provide a safer future for drivers around the world.”

An investigation previously found that Tyre’s harness was locked through the descent, but he dislodged from his seat through the 430-foot fall when the magnets engaged. Tire’s death was ruled the result of “multiple injuries and trauma.”

ICON Park said at the time that it could “fully cooperate” with the authorities.

This article was originally published on : www.essence.com
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Tireless HIV/AIDS advocate A. Cornelius Baker dies

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HIV/AIDS Advocate, A. Cornelius Baker


A. Cornelius Baker, a tireless advocate of HIV and AIDS testing, research and vaccination, died Nov. 8 at his home in Washington, D.C., of hypertensive, atherosclerotic heart problems, in response to his partner, Gregory Nevins.

As previously reported, Baker was an early supporter for people living with HIV and AIDS within the Nineteen Eighties, when misinformation and fear-mongering in regards to the disease were rampant.

According to Douglas M. Brooks, director of the Office of National AIDS Policy under President Obama, it was Baker’s Christian faith that guided him toward compassion for others.

“He was very kind, very warm and inclusive – his circles, both professional and personal, were the most diverse I have ever seen, and he was guided by his Christian values,” Brooks told the outlet. “His ferocity was on display when people were marginalized, rejected or forgotten.”

In 1995, when he was executive director of the National AIDS Association, Baker pushed for June 27 to be designated National HIV Testing Day.

In 2012, he later wrote on the web site of the Global Health Advisor for which he was a technical advisor that: “These efforts were intended to help reduce the stigma associated with HIV testing and normalize it as part of regular screening.”

https://twitter.com/NBJContheMove/status/1856725113967632663?s=19

Baker also feared that men like himself, black gay men, and other men from marginalized communities were disproportionately affected by HIV and AIDS.

Baker pressured the Clinton administration to incorporate black and Latino people in clinical drug trials, and in 1994 he pointedly told the Clinton administration that he was bored with hearing guarantees but seeing no motion.

According to Lambda Legal CEO Kevin Jennings, yes that daring attitude that defines Baker’s legacy in the world of ​​HIV/AIDS promotion.

“Cornelius was a legendary leader in the fight for equality for LGBTQ+ people and all people living with HIV,” Jennings said in a press release. “In the more than twenty years that I knew him, I was continually impressed not only by how effective he was as a leader, but also by how he managed to strike the balance between being fierce and kind at the same time. His loss is devastating.”

Jennings continued: “Cornelius’ leadership can’t be overstated. For many years, he was one in all the nation’s leading HIV/AIDS warriors, working locally, nationally and internationally. No matter where he went, he proudly supported the HIV/AIDS community from the Nineteen Eighties until his death, serving in various positions including the Department of Health and Human Services, the National Association of Persons with Disabilities AIDS, and the Whitman-Walker Clinic . Jennings explained.

Jennings concluded: “His career also included several honors, including being the first recipient of the American Foundation for AIDS Research Foundation’s organization-building Courage Award. Our communities have lost a pillar in Cornelius, and as we mourn his death, we will be forever grateful for his decades of service to the community.”

Kaye Hayes, deputy assistant secretary for communicable diseases and director of the Office of Infectious Diseases and HIV/AIDS Policy, in her comment about his legacy, she called Baker “the North Star.”.

“It is difficult to overstate the impact his loss had on public health, the HIV/AIDS community or the place he held in my heart personally,” Hayes told Hiv.gov. “He was pushing us, charging us, pulling us, pushing us. With his unwavering commitment to the HIV movement, he represented the north star, constructing coalitions across sectors and dealing with leaders across the political spectrum to deal with health disparities and advocate for access to HIV treatment and look after all. He said, “The work isn’t done, the charge is still there, move on – you know what you have to do.” It’s in my ear and in my heart in the case of this job.

Hayes added: “His death is a significant loss to the public health community and to the many others who benefited from Cornelius’ vigilance. His legacy will continue to inspire and motivate us all.”

Baker is survived by his mother, Shirley Baker; his partner Nevins, who can be senior counsel at Lambda Legal; his sisters Chandrika Baker, Nadine Wallace and Yavodka Bishop; in addition to his two brothers, Kareem and Roosevelt Dowdell; along with the larger HIV/AIDS advocacy community.


This article was originally published on : www.blackenterprise.com
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Health and Wellness

Bovaer is added to cow feed to reduce methane emissions. Does it pass into milk and meat? And is it harmful to humans?

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There are growing concerns in regards to the use of feed supplements, Bowar 10to reduce methane production in cows.

Bovaer 10 consists of silicon dioxide (mainly sand), propylene glycol (food stabilizer approved by Food Safety Australia New Zealand) and lively substance 3-nitrooxypropanol (3-NOP).

There has been an enormous amount of misinformation in regards to the safety of 3-NOP, with some milk from herds fed this additive being labeled “Frankenmilk”. Others feared it could get to humans through beef.

The most significant thing is that 3-NOP is secure. Let’s clear up some major misconceptions.

Why do we want to limit methane production?

In our attempts to limit global warming, we’ve placed the best emphasis on CO₂ because the major man-made greenhouse gas. But methane is also a greenhouse gas, and although we produce less of it, it is: a much stronger greenhouse gas than CO₂.

Agriculture is the largest a man-made source of methane. As cattle herds expand to meet our growing demand for meat and milk, reducing methane production from cows is a vital way to reduce greenhouse gas emissions.

There are several ways to do that. Stopping bacteria within the stomachs of cows that produce methane one approach is to produce methane.

The methane produced by cows and sheep doesn’t come from the animals themselves, but from the microbes living of their digestive systems. 3-NO stop the enzymes that perform the last step of methane synthesis in these microorganisms.

3-NOP is not the one compound tested as a feed additive. Australian product based on seaweed, Rumin8for instance, it is also in development. Saponins, soap-like chemicals present in plants, and essential oils as well has been examined.

However, 3-NOP is currently one of the popular effective treatments.

Nitrooxypropanol structure: red balls are oxygen, gray carbon, blue nitrogen and white hydrogen.
PubChem

But is not it poison?

There are concerns on social media that Bovaer is “poisoning our food.”

But, as we are saying in toxicology, it’s the dose that makes the poison. For example, arsenic is deadly 2–20 milligrams per kilogram of body weight.

In contrast, 3-NOP was not lethal on the doses utilized in safety studies, up to 600 mg 3-NOP per kg body weight. At a dose of 100 mg per kg body weight in rats, it didn’t cause any adversarial effects.

What about reproductive issues?

The effect of 3-NOP on the reproductive organs has generated numerous commentary.

Studies in rats and cows showed that doses of 300–500 mg per kg body weight caused: contraction of the ovaries and testicles.

In comparison, to achieve the identical exposure in humans, a 70 kg human would want to eat 21–35 grams (about 2 tablespoons) of pure 3-NOP every day for a lot of weeks to see this effect.

No human will likely be exposed to this amount because 3-NOP doesn’t pass into milk – is fully metabolized within the cow’s intestines.

No cow will likely be exposed to these levels either.

The cow licks itself
Cows will not be exposed to levels tested on animals in laboratory studies.
Ground photo/Shutterstock

What about cancer?

3-NOP is not genotoxic or mutagenicwhich implies it cannot damage DNA. Thus, the results of 3-NOP are dose-limited, meaning that small doses will not be harmful, while very high doses are (unlike radiation where there is no secure dose).

Scientists found that at a dose of 300 mg per kilogram of body weight benign tumors of the small intestine of female ratsbut not male rats, after 2 years of every day consumption. At a dose of 100 mg 3-NOP per kg body weight, no tumors were observed.

Cows eat lower than 2 grams of Bovaer 10 per day (of which only 10% or 0.2 grams is 3-NOP). This is about 1,000 times lower than the appropriate every day intake 1 mg 3-NOP per kg body weight per day for a cow weighing 450 kg.

This level of consumption will likely be not the result in cancer or any of them other adversarial effects.

So how much are people exposed to?

Milk and meat consumers will likely be exposed to zero 3-NOP. 3-NOP doesn’t penetrate milk and meat: is completely metabolized within the cow’s intestines.

Farmers could also be exposed to small amounts of the feed additive, and industrial employees producing 3-NOP will potentially be exposed to larger amounts. Farmers and industrial employees already wear personal protective equipment to reduce exposure to other agricultural chemicals – and it is advisable to do that with Bovear 10 as well.

Milk
3-NOP doesn’t penetrate milk and meat.
Shutterstock

How widely has it been tested?

3-NOP has been in development for 15 years and has been subject to multiple reviews by European Food Safety Authority, UK Food Safety Authority AND others.

It has been extensively tested over months of exposure to cattle and has produced no unintended effects. Some studies actually say so improves the standard of milk and meat.

Bovaer was approved for use in dairy cattle by the European Union from 2022 and Japan in 2024. It is also utilized in many other countries, including: in beef products, amongst others Australia.

A really small amount of 3-NOP enters the environment (lower than 0.2% of the dose taken), no accumulates and is easily decomposed subsequently, it doesn’t pose a threat to the environment.

Since humans will not be exposed to 3-NOP through milk and meat, long-term exposure is not an issue.

What does Bill Gates have to do with this?

Bill Gates has invested in a distinct feed processing method for methane, Australian seaweed-based Rumin8. But he has nothing to do with Bovaer 10.

The Bill & Melinda Gates Foundation awarded research grants to the corporate producing 3-NOP for malaria control researchnot for 3-NOP.

The bottom line is that adding 3-NOP to animal feed doesn’t pose any risk to consumers, animals or the environment.

This article was originally published on : theconversation.com
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