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A Caregiver's Perspective on Sickle Cell and a Bone Marrow Transplant
Manage episode 332190586 series 3359372
Το περιεχόμενο παρέχεται από το Sickle Cell Community Consortium. Όλο το περιεχόμενο podcast, συμπεριλαμβανομένων των επεισοδίων, των γραφικών και των περιγραφών podcast, μεταφορτώνεται και παρέχεται απευθείας από τον Sickle Cell Community Consortium ή τον συνεργάτη της πλατφόρμας podcast. Εάν πιστεύετε ότι κάποιος χρησιμοποιεί το έργο σας που προστατεύεται από πνευματικά δικαιώματα χωρίς την άδειά σας, μπορείτε να ακολουθήσετε τη διαδικασία που περιγράφεται εδώ https://el.player.fm/legal.
The Sickle Cell Community Consortium powers the Vitamin SC3 podcast. This new broadcast features different weekly themes for the sickle cell community, their families, supporters, healthcare workers, and allies. Each week episodes of the Vitamin SC3 Podcast will air with a different theme.
The Caring is Giving segment focuses on the stories of caregivers whose loved ones are living with sickle cell disease. I spoke with special guest, Diane, the grandmother of Genesis, a bone marrow transplant recipient. Diane is both a teacher and sickle cell caregiver.
Diane spoke about Caregiving for Genesis a Sickle Cell and a Bone Marrow Transplant recipient:
This episode shares information about children diagnosed in utero with sickle cell disease. Genesis's mother learned she would have sickle cell disease after receiving amniocentesis testing. It is believed that for the first six months of a child's life, children with sickle cell disease still have prevalent fetal hemoglobin (hemoglobin F, HbF) from their mothers. Diane, the grandmother of Genesis shared with us the earlier experiences that she had while caring for her granddaughter.
The American Red Cross recorded that children with sickle cell disease are at risk of receiving a stroke. Diane spoke to us about her granddaughter's experience suffering from a silent stroke.
Diane advises parents to teach their children how to communicate what is going on with their health, so they can tell the doctors and healthcare workers how they feel themselves. She mentioned that this may help the child gain more respect early on in their lives as they communicate with health care professionals.
During the conversation Diane speaks about about pediatric patients and depression, If you are curious about the correlation, please read this article: Screening for Depression in Adolescents with Sickle Cell Disease.
If this episode intrigued you to learn more about the clinical trials available for sickle cell patients, you should visit ClinicalTrials.gov. Also check out the trials that are being done at the National Institute of Health.
Connect with Diane's granddaughter Genesis at:
Facebook @GoldenGlint
Instagram @GenesisSCD_Warrior
New Book "Rebirth: A Sickle Cell Warrior's Crossover (Warrior's Sickle Cell Poetry Collection Book 1)"
Website: www.goldenandglint.com
Follow Elle Cole
Instagram: @CleverlyChanging
Website: https://CleverlyChanging.com
Twitter: @CleverlyChangin
Facebook: @CleverlyChanging
Donate:
Did you enjoy listening to this episode? If so, please consider donating to keep this podcast going. Donations are tax deductible and are made to the Sickle Cell Community Consortium.
The next episode of the Vitamin SC3 Podcast drops on Monday
Please tune in next week for a new episode we will be hearing from the segment Essential RX with Dr. Lametra Scott .
Do you Want to Become a Sickle Cell Consortium Partner?
Become a Sickle Cell Community Consortium member by clicking here to learn more.
Follow their Instagram and Facebook pages if you want to learn more about the Sickle Cell Community Consortium.
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