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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

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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.

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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.

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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.

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

The General Surgeon Office warns about the correlation between alcohol consumption and cancer

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Before you roll your eyes to those that start the 12 months of “dry January”, you possibly can consider again.

According to counselor Published on Friday by an American surgeon, Dr. Vivek Murty, there could also be a direct relationship between alcohol consumption and increased risk of cancer.

“Alcohol is a recognized, preventing cause of cancer responsible for about 100,000 cases of cancer and 20,000 deaths due to cancer a year in the United States-more than 13,500 accident accidents in the event of road accidents in the USA in the USA-Most Americans are not aware of this risk,” said Murty.

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Consulting notes that there’s a “well -established” link to at the very least seven varieties of cancer, including breast, large intestine, esophagus, liver, mouth (mouth), throat (throat) and voice box (larynx), no matter the kind of alcohol consumed.

The report stated that relating to breast cancer, 16.4% of breast cancer cases is attributable to alcohol consumption. Meanwhile, yearly alcohol contributes to about 100,000 cancer cases and about 20,000 deaths attributable to cancer.

The US General Surgeon Office also stated that the risk of cancer increases as alcohol consumption increases.

“For some cancers, such as breast, mouth and throat cancer, evidence shows that the risk of developing cancer can begin to grow about one or less drinks a day,” we read in the guide.

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According to the US surgeon, alcohol is now the third leading “possible to prevent” explanation for cancer in the US, for tobacco and (although not at all times possible to stop, but to treat) obesity.

Although alcohol consumption will not be the only decisive factor. Dorada emphasizes how the risk of developing an individual’s cancer related to alcohol consumption relies on a “complex” combination of things akin to genetics, environment, access and many others.

Despite this, Murty calls for increased correlation awareness between the American population. It proposes updated warning labels regarding products containing alcohol and other agents, including re -assessment of the limits of guidelines for alcohol consumption with a purpose to have in mind the risk.

25 small changes to which you can commit yourself for a healthier new year

Black Americans may not drink as much as other demographic data, and even develop some cancers at the same pace; nevertheless, Black Americans are dying of cancer the most. Not to say that some cancers grew amongst younger adults, including black younger adults. This advice arrives when breast cancer increases amongst younger ladies, and deaths attributable to cancer should increase amongst men, with black men the most threatened.

However, as the American Surgeon’s office advises, many cancers whose adults could be prevented by learning the risk and change of lifestyle.

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(tagstotranslander) alcohol

This article was originally published on : thegrio.com
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Rooted in the tradition: doctrine practices from the diaspora you should know

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Rooted in the tradition: doctrine practices from the diaspora you should know

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2024 was the starting of my family Renaissance. As a licensed coach of well-being, healing doctor and an editor with over 15 years of experience specializing in health, well-being and spirituality, I spent my profession, examining how we are able to cultivate balance and transformation. But after reading MetamorFic in December 2023. Jonathan L. Dent– A astrologer, numerologist, REIKI practice and abôrisà (Bhacta Orisha, Divine forces in the spiritual tradition of Joruba) – I began to mix again with the practitioners of biological renewal rooted in African and Caribbean diasporas in the way they didn’t.

In a world where it is commonly created, these family rituals jogged my memory that an actual healing arises from wisdom, which we already wear deeply. Through practice and research, I discovered how evaporation, ritual baths and bush teas can ground us in something greater than ourselves, re -connecting with the parts of our being, that capitalism and colonialism undressed. It was a memorizing journey – a re -combination with timeless knowledge that nourishes the body, mind and spirit in a deeply releasing way.

Below I’ll share how you can activate these easy but powerful practices in your personal life and where they arrive from. If you are latest, connect with a trusted practitioner to make certain you exercise safely and with respect. Also be careful in your materials – if you don’t grow your personal, attempt to support suppliers who prioritize ethical acquisition, sustainable development and transparency, and search for certificates comparable to Good agricultural practices (gap)IN Good production practices (GMP)or organic labels.

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Ritual baths – doesn’t reach from the inside

As an individual with generalized anxiety disorder (GAD) and panic disorder, baths are one in all my favorite ways to ground yourself. In particular, ritual baths are an actual act of self -love. In Afro-Karibs traditionsBathing will not be nearly physical purity – it’s a spiritual pure, a approach to wash negative energy and restore balance for the body and soul.

When I attempted my first ritual bath, I quickly realized that the intention was as vital as the ingredients. I might stop to heal or transform, using ingredients comparable to sea salt, rose petals and herbs comparable to chamomile or lavender. When I soaked, I might feel that the burden of all the things I wore was beginning to melt.

How to show it on: Add sea salt, rose petals or herbs, comparable to lavender and rosemary for bathing. When you settle in warm water, take a moment to set the intention. Regardless of whether it’s healing, peace or personal development, deal with enabling the water to soak up any energy that you are able to release.

Evaporation – Cleaning ritual

Evaporation is one in all the most sacred biological renewal practices in African and Caribbean cultures. For example, Yoni is evaporating-also often called vaginal evaporation or steaming V-Antine practice utilized by women around the world to advertise female health and well-being, especially in African and native cultures. For centuries, evaporation was used to cleanse the body, remove sinuses and rejuvenate the skin. But I discovered that it also has the power to cleanse the mind.

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Especially herbal evaporation is a ritual of presence – a slowdown in a world that’s at all times in motion. The act quietly with steam, inhaling healing herbs, brings moments of peace, clarity and relationship with our ancestors. Personally it was like that Rescuer during the respiratory system disease.

How to show it on: Cook water and add herbs, comparable to rosemary or eucalyptus – whatever resonates with you. Look through the towel on the head, bend over a pair and deeply inhale for 10-Quarter-hour. Let the warmth and herbs cleanse not only your body, but in addition the spirit.

Bush tea – healing tradition

In African and Caribbean diaspors, bush tea is greater than just drinks – healing, healing and deeply rooted in heritage. Historically, bush teas were made using plants feeding directly from wild boar – completely known as “bush”. Healers and herbs fastidiously selected herbs to unravel various fears, comparable to colds, digestive problems, menstrual discomfort and even spiritual purification.

Over the years, brewing tea is a grounding practice for me, a quiet moment after I connect with nature and my ancestors. Smipping a warm cup of ginger tea will not be only a hydration; It’s about honoring plants and the treatment they provide. Teas manufactured from plants comparable to Rooibos AND Ceasee (bitter melon plant) For generations they’ve been valued due to their powerful healing properties and I personally experienced their advantages.

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How to show it on: Even tea with herbs comparable to ginger, hibiscus or lemon grass. As you prefer it, spend just a few moments to inhale the aroma, enjoy the taste and take into consideration combining with nature and your personal healing. Add honey or lemon to extend the advantages. It can be an ideal practice of mindfulness to getting into the present.

Regardless of whether you cook herbs, take a ritual bath or brew tea from the bush, you again connect with the heritage of wisdom and healing transmitted by generations. These practices are each justified and a strong act of reclamation, cultivating your well -being while honoring your roots.

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

The Alfred cyclone is already retraumatized people who survived other disasters. I am one of them

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In 2011, AS ISA cyclone I was approaching the Queensland coast, I sat at home in a tropical north of the state and nervous what the longer term would bring. Would my family be okay? Would our house be destroyed? Would my workplace be damaged and my work is uncertain? Would my community be devastated?

Now that we’re waiting for Cyclone Alfred to make a landing, I watch from my recent home in Melbourne. I’m protected. But last night I couldn’t sleep. I have intrusive thoughts, remembering the way it was when Cyclone Yasi fell into us. I feel indignant, dispersed and restless. The report from the upcoming cyclone makes my heart race, so I turned off the TV.

As someone who has been investigating the influence of disasters for over 20 years, I will realize that now, I feel like I feel, it is just like how I felt all these years ago. Again, I experience the conventional range of common stress reactions after surviving the disaster, although this one doesn’t affect me directly.

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This is referred to as Retraumatizationwhere we experience stress reactions experienced because of this of a traumatic event within the face of a brand new, similar incident.

As an emergency researcher to a big selection of disasters, I understand why I feel like this.

However, many people may not realize that the stress they are actually experiencing is related to an earlier disaster or a traumatic event of their lives. This earlier disaster could be one other cyclone or other event, corresponding to a flood or fire in bushes.

There could also be some signs and symptoms of retraumatization:

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  • Informational thoughts (for instance, I remember my fear of the expected tide of the water tides throwing at me in the dead of night when Cyclone Yasi landed)

  • nightmares and sleep problems

  • Hypervigilance (for instance, feeling “on the edge” all day)

  • Sensitivity to triggers (for instance, the sound of intense wind and windows may cause intense feelings because they remind me of the night by which we experienced cyclone yasi passing over us)

  • I feel isolated

  • Thinking about planning or attempting to suicide

  • Panic

  • Use/abuse of substances corresponding to alcohol and other drugs

  • Height of unhealthy behavior (for instance, being more at risk of aggression or violence).

For many of us, the Alfred cyclone arouses memories and feelings, and the re -appearance of these stress reactions could be confronted. It could seem that the re -opening of the wound, which didn’t quite heal.

The catastrophe after the disaster take their toll

We are actually starting to grasp the results of exposure to many disasters – fires of bushes, cyclones, floods and don’t forget in regards to the pandemic with Kodcja – which eroded our immunity.

This type of repeated exposure affects our sense of security, security and even our hope for the longer term, all increase the chance worse mental health.

In the case of people with post -traumatic stress syndrome (PTSD), retrajumatization may cause that people are experiencing their past traumas in intense details. It could seem Earlier traumatic events occur again.

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What to do now and in the longer term

However, there are steps that we are able to take to assist construct our immunity within the face of many disasters.

For now

It is value understanding in the meanwhile How we react to trauma. We can see a number of physical reactions (for instance, my heart raced), psychological reactions (for instance, I feel more restless than usual) and social effects (for instance, I canceled dinner plans last night, because I didn’t want to go away the home).

It is also essential Stay in touch with our odd social supportBecause they’ll act as a big stress response buffer.

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So, despite the incontrovertible fact that I stopped last night, I was in group chat, discussing real housewives from Sydney with friends, which helped reduce each the reactions of physical and mental stress I experienced.

It will help stick with friends, family, neighbors and other support.
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For later

In the long term, it is useful to develop and implement Self -clinic plan This includes activities supporting our emotional, physical and spiritual health.

Care, which implies devoting time to doing things that help your well -being and improve physical health and mental health. This may help cope with stress reactions which will appear as part of retrajumatization. Even small self -care acts in on a regular basis life can have an amazing impact.

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Today I devoted time for a brief walk across the park and listened to some of my favorite music. It helped in the meanwhile, nevertheless it also helps me in the long term, when I routinely include these little self -care acts in my on a regular basis life.

We must also consider The first respondents and volunteers who will prepare for the Alfred cyclone i community Similar disasters devastated previously (for instance, floods 2022 in Lismore, recent southern Wales). With their exposure to cumulative trauma, these groups will need Permanent, concentrated support.

Most importantly, we must understand that the best way we feel is normal. Be patient with yourself and search for small opportunities to take control of reactions.

I keep the tv switching off (except when real housewives are turned on).

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Some resources

The Blukot website, from the National Center of Excellence for Complex Trauma, comprises more information on how we do Answer the trauma. Black Dog Institute leads you by developing Self -clinic plan.

If you’re the primary respondent, you’ll be able to access free treatment and support via a number of suppliers, including: Phoenix AustraliaIN Australian Strong and Black Dog Institute.


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This article was originally published on : theconversation.com
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