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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

US communities phase out fluoride use in public drinking water

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fluoride, water


There is a battle raging in American cities over whether to proceed using fluoride in water.

This is a process generally known as fluoridation that began around 1945. According to to the American Cancer Society became popular across the country after scientists noticed that individuals living in water with higher concentrations of fluoride had less tooth decay.

In 1962, the U.S. Public Health Service (PHS) advisable adding fluoride to public drinking water supplies to forestall tooth decay. The American Cancer Society estimates that fluoride is currently used in public drinking water supplied to roughly three in 4 Americans.

However, opponents have been warning for years that fluoride in drinking water is unsafe to devour. One of the organizations leading this initiative is Fluoride Action Network (FAN). The organization, whose mission is to lift awareness of what it claims is the “toxicity of fluoride compounds,” says many of the world’s developed countries don’t use fluoride in drinking water at the identical levels as America, or in any respect.

The organization says yes it helped over 500 communities successfully reject fluoridation, and there could also be more.

Federal leaders have gotten increasingly vocal in their support for ending the use of fluoride

While FAN says communities have rejected fluoridation for the past few a long time and the method has stalled in consequence, the fight has been thrust into the highlight over the past few months.

First, the National Toxicology Program, a federal agency throughout the Department of Health and Human Services, reported with “moderate certainty” that there may be an association between communities with higher levels of fluoride exposure and lower IQ in children. According to the Associated Press, these communities use greater than twice the advisable limit.

A month later, a federal judge apparently ordered the U.S. Environmental Protection Agency (EPA) to further regulate fluoride in drinking water because higher levels could affect children.

Robert F. Kennedy, nominated by President-elect Donald Trump to direct the Department of Health and Human Services, announced an end to fluoridation.


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

WATCH: Cynthia Erivo on the importance of being a sister – Essence

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This article was originally published on : www.essence.com
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Phenergan is no longer recommended for children under 6 years of age due to the risk of hallucinations. Here’s what you can use instead

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The Australian Drugs Regulatory Authority has issued an order safety warning over Phenergan and related products containing the antihistamine promethazine.

The Therapeutic Goods Administration has stated that over-the-counter products shouldn’t be given to children under six years of age due to concerns about serious unwanted side effects akin to hyperactivity, aggression and hallucinations. Breathing may turn into slow or shallow, which can be fatal.

When high doses are administered to young children, difficulties in learning and understanding, including reversible cognitive deficit and mental disability, may occur. – said the TGA.

The latest warning follows international and Australian concerns about the drug in young children, which is commonly used to treat conditions akin to hay fever and allergies, motion sickness and for short-term sedative effects.

What is promethazine?

Promethazine is a “first generation” antihistamine that has been sold over the counter in Australian pharmacies for a long time for a spread of conditions.

Unlike many other drugs, first-generation antihistamines can cross the blood-brain barrier. This means they affect your brain chemistry, making you feel drowsy and sedated.

In adults, this will likely be useful for sleep. However, in children, these drugs can cause serious unwanted side effects on the nervous system, including those mentioned on this week’s safety alert.

We’ve known about this for a while

We have known about the serious unwanted side effects of promethazine in young children for a while.

Advice regarding 20 years ago In the United States, the drug was not recommended for use in children under two years of age. In 2022, an Australian Medicines Advisory Committee made its own suggestion to increase the age to six. New Zealand released similar warnings and advice in May this 12 months.

Over the last ten years, there have been 235 cases of serious unwanted side effects from promethazine in each children and adults reported to the TGA. Of the 77 deaths reported, one was a toddler under six years of age.

Reported unwanted side effects in each adults and children included:

  • 13 cases of accidental overdose (leading to 11 deaths)
  • eight cases of hallucinations
  • seven cases of slow or shallow respiration (leading to 4 deaths)
  • six cases of decreased consciousness (leading to five deaths).

TGA security alert comes after an internal investigation by the manufacturer of Phenergan, Sanofi-Aventis Healthcare. This investigation was initiated in 2022 advice from the Medicines Advisory Committee. The company has now updated its information for consumers and healthcare professionals.

What can you use instead?

If you have allergies or hay fever in young children, non-sedating antihistamines akin to Claratine (loratadine) or Zyrtec (cetirizine) are preferred. They provide relief without the risk of sedation and other disturbing unwanted side effects of promethazine.

If symptoms of a chilly or cough occur, parents must be reassured that these symptoms will normally subside with time, fluid intake, and rest.

Saline nasal sprays, adequate hydration, a humidifier or elevating the child’s head can relieve the congestion related to hay fever. Oral products containing phenylephrine marketed for nasal congestion must be avoided because evidence shows that this is the case This article was originally published on : theconversation.com

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