Etnisk mangfold i norske medier og haplotyper med Xueqi Pang
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haplo
Explore " haplo" with insightful episodes like "Etnisk mangfold i norske medier og haplotyper med Xueqi Pang", "Physician, Donor and Dad of an Infant with AML: Dr. Omar Durani shares his story.", "Physician and MDS Survivor Anna Holness", "Kelly Barnwell Shares Her Journey and her Haplo Experience" and "Lew Christie: Patient Perspective: Multiple Transplants, GVHD Struggles and Still Going Strong" from podcasts like ""Kulturkræsj", "Marrow Masters", "Marrow Masters", "Marrow Masters" and "Marrow Masters"" and more!
Episodes (7)
Physician, Donor and Dad of an Infant with AML: Dr. Omar Durani shares his story.
No amount of medical training can adequately prepare you for the news that your 9 month-old-daughter has a rare form of leukemia, AML. But that's the position Dr. Omar Durani found himself in when Kenza was diagnosed in 2016.
Throughout his touching story, Dr. Durani talks of he and his wife moving into their daughter's 100 square foot hospital room, the roller coaster of multiple rounds of aggressive chemo, organizing bone marrow drives through DKMS, and ultimately getting Kenza into a clinical trial.
After failing to find an exact match, Dr. Durani became his daughter's donor for a haplo transplant when they found out his wife was pregnant with their second child.
Dr. Durani shares so many lessons learned throughout this adventure - including the need to register more bone marrow donors in minority communities, the importance of being a strong patient advocate for you or your child, and the importance of clinical trials. Also, don't be afraid to ask for multiple medical opinions. Your medical teams will not be threatened - they want to get it right.
And how is Kenza today? You will want to hear all about it. Inspiration at its best.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
DKMS Donor Registry: https://www.dkms.org/ DKMS is the world’s largest bone marrow donor center with over 10.5 million registered donors and operations in seven countries.
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society: https://www.lls.org/
Seagen: https://www.seagen.com/
Omeros Corporation: https://www.omeros.com/
Additional media pieces on The Durani Family Journey:
- https://www.youtube.com/watch?v=CnasRnxGw6w
- https://www.12news.com/article/news/local/valley/bone-marrow-donors-sought-among-islamic-community/75-230814673
- Cure Magazine article: https://www.curetoday.com/view/coming-of-age-new-research-efforts-are-improving-treatment-of-childhood-blood-cancers
- https://browngirlmagazine.com/2016/05/cancer-touches-everyone-help-cure-kenza/
- https://www.healthline.com/health-news/bone-marrow-drive-for-muslim-girl-goes-viral
- https://cw33.com/news/save-kenza-little-girl-with-leukemia-spreads-awareness-hope/
- https://fwtx.com/news/voice/dallas-toddler-raises-awareness-across-country/
Physician and MDS Survivor Anna Holness
Anna Holness, a Myelodysplastic syndromes (MDS) survivor received her transplant in 2017. Her background as a physician gave her a unique perspective as she navigated her journey. Anna researched, gained as much medical knowledge as she could, and even planned for the worst case scenario. She wanted to make sure her kids had as much knowledge and as many memories as possible - just in case. After all, forewarned is forearmed. Anna explains how she empowered them by preparing them to lessen their potential burden.
Anna was motivated by her ability to take charge of the things within her control. In doing so, she taught her son and daughter valuable lessons about resiliency and adaptability. Now out of college, they feel like they can handle anything.
We also cover the importance of peer support - the ability to talk to someone who's been through what you're going through. And finally, this journey has given Anna a fresh perspective, and appreciation, for the beauty in life.
And the best part--Anna is thriving today as is her family! She will share her thoughts regarding yoga and the calm it brings as well.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
Resources:
Yoga for Cancer - Y4C - https://y4c.com/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society: https://www.lls.org/
Seagen: https://www.seagen.com/
Omeros Corporation: https://www.omeros.com/
Kelly Barnwell Shares Her Journey and her Haplo Experience
Diagnosis: Acute Lymphoblastic Leukemia (ALL).
Merely 45 years old at the time, this wonderful lady has much to share in the past three years! Kelly has had two transplants, the second being a haploidentical transplant, a haplo. Get ready to be inspired.
Note: At the time Kelly recorded this podcast with us in the spring, she was in remission. Since then, she has had a relapse but we are so happy to say she is getting through this next chapter and hoping to make a full recovery.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and The Leukemia & Lymphoma Society.
nbmtLINK Website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
Lew Christie: Patient Perspective: Multiple Transplants, GVHD Struggles and Still Going Strong
Lew Christie is 71 years of age and was diagnosed with Acute Myeloid Leukemia (AML) in December 2012, with a very pessimistic diagnosis. A worker at the scene of 9-11 in NYC in 2001, Lew believes his health issue stemmed from the carcinogens breathed in after that catastrophic tragedy.
Settle in and get ready to be inspired and humbled by the journey of Lew. Lew received two transplants, one from an unrelated donor in spring of 2014. Later that year, he received a haplo transplant from his daughter.
GVHD also plays a significant role in Lew's continuous journey.
Lew is a husband, dad, grandpa and great friend, and he credits his incredible wife's support. He shares his experiences with others through Facebook groups and finds support groups to be very helpful. Lew is a busy guy and you will hear more about all the activities he participates in during in his robust life as a survivor.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
One of Lew's favorite things is walking, Visit the Charity Miles website for more on a great way to get your steps in and give back- https://charitymiles.org/
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and The Leukemia & Lymphoma Society.
nbmtLINK Website: https://www.nbmtlink.org/
The Leukemia & Lymphoma Society: https://www.lls.org/
Without a Family Match, Am I Out of Options?
This episode features Dr. Effie Petersdorf, a member of the Clinical Research Division, Fred Hutchinson Cancer Research Center; Professor, Division of Oncology and Department of Medicine, University of Washington School of Medicine, and Attending Physician, Seattle Cancer Care Alliance.
This episode will focus on the many transplant options available to people, whether it is a family member or a non-family member. Listeners will learn more about how this all works. It will give hope to so many in need of a transplant.
This one covers it all!
- HLA tissue types explained
- Learn about the success rate as it related to how common the patient's HLA tissue type.
- Learn about 10 out of 10 matches; 9 out of 10 matches, etc.
- Haplo transplant explained
- Cord blood transplant covered at length
- A poignant (unmatched) patient story sure to give hope
- A cord blood transplant involves shipping the frozen units to the transplant center when the patient is ready to receive them.
- Major advances in related donor, unrelated donor and cord blood transplantation have occurred throughout the past several decades, and have significantly improved the chances for patients to receive life-saving therapy for blood disorders.
- If a patient does not have a match in the family, there are 3 sources of stem cells for transplantation these days: mismatched family members, unrelated donors, and cord blood units.
- Many resources available including: Be The Match and the World Marrow Donor Association websites.
For additional resources from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268. The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
This season of Marrow Masters is sponsored by the nbmtLINK, Seattle Genetics, and our esteemed link partners.
If I Am over 60, Am I Too Old for a Bone Marrow/Stem Cell Transplant?
Time to bust another myth regarding age and transplant. Listeners will be relieved to hear about older patients receiving life-saving transplants and most often thriving post-transplant.
The likelihood of being diagnosed with a hematologic malignancy (blood cancers: most leukemias, lymphoma, multiple myeloma, etc.) increases substantially above the age of 60.
In the past (more than 20 years ago), blood stem cell transplantation was mostly available to younger patients. However, that is NOT the case today.
Reduced-intensity transplants (developed in the 90's) have allowed treatment of older and/or medically infirm patients. The focus is more on the immunologic graft-vs-tumor effect than on high-dose upfront therapy.
This episode features Dr. Marco Mielcarek, a medical oncologist who is specialized in blood and marrow transplantation. He is a professor of medicine at the University of Washington and the Medical Director of the Adult Blood and Marrow Transplant program at Fred Hutchinson Cancer Research Center and Seattle Cancer Care Alliance.
Dr. Marco explains autologous vs allogeneic transplant concept (patient’s own stem cell vs. cell from a donor --i.e. sibling or unrelated or other)
At SCCA, Dr. Marco explains, over the last 20 years, the median age of our transplants patients has increased by 13 years (currently: median age, 58 years). This means that half of our patients are older than 58. The oldest patient transplanted recently was 81 years old.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For additional resources from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Seattle Genetics, and our esteemed link partners.