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Although it sounds strange, I am beginning to believe that breast cancer possibly has saved my life. In October 2015, I was diagnosed with stage 2 lobular carcinoma of the breast. My cancer was found during my routine mammogram. I opted for a bi-lateral mastectomy and then had 33 radiation treatments in early 2016. I saw my
oncologist
oncologist:
(on-KAH-luh-jist) A doctor…
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Our 8 year-old daughter Rachel was admitted to Groote Schuur Hospital in Cape Town, South Africa yesterday, March 6, to prepare for her
bone marrow transplant
bone marrow transplant:
A bone marrow transplant (BMT) is also called a stem cell transplant (SCT) or hematopoietic stem cell transplant (HSCT).The procedure replaces unhealthy blood-forming stem cells with healthy ones and offers…
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In January 2016, my 9 year-old daughter Emma turned yellow. After seeing her regular doctor, we were sent straight to the hospital. They found that her liver enzymes were extremely elevated and sent us to a second hospital. After extensive blood panels and scans, they still couldn’t determine the cause of Emma’s liver inflammation, and so the process to find her a new liver began.
We returned…
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In June 2011, my daughter Gabby was seven, and we had just relocated from Las Vegas to Reno, Nevada. She seemed tired and had alarming bruises on her shins. She also had a persistent ear infection and I noticed red dots (petechiae) on her shoulders.
I’m a nurse and work for a pediatrician, so seeing all this in a short time set off alarms for me. I took Gabby to Dr. Robin White's pediatric…
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In 2007, when I was 25 years old, I started to get winded going up a flight of stairs. I also began having two hour long nosebleeds, and I knew something was wrong. I had my bloodwork checked and shortly after my doctor told me to go to the hospital right away because my blood counts were extremely low. I had no idea what that meant at the time, and wasn’t overly alarmed. Two weeks and two…
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Part 1
In late August 2017, AAMDSIF paid a visit to NIH patient John Vasquez and his sister/caregiver Isabella, several weeks after his stem cell transplant for severe
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic…
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34-year-old Krissy Kobata is a passionate patient and advocate/activist. Diagnosed in 2008 with MDS, she’s the epitome of resilience as she has waited for years to find a matched donor. She has devoted this time to helping other patients by enlarging the Be The Match®
bone marrow
bone marrow:
The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow.
registry…
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Join patients, families and caregivers for the 2023 Dallas, TX Patient and Family Conference This event is chaired and organized by Dr. Taha Bat from UT Southwestern.
Patients with
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The…
Conference Event last updated
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Highlights
Haploidentical stem cell transplantation with post-transplantation
cyclophosphamide
cyclophosphamide:
Cyclophosphamide is in a class of medications called alkylating agents. When used to treat cancer, it works by slowing or stopping the growth of cancer cells in your body. When cyclophosphamide is used to treat bone marrow failure, it works by suppressing your body's…
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Ron had a sudden alert when he learned he had one of the rarest of diseases. Listen to this conversation to learn how he managed diagnosis, treatment, and survivorship in this episode.
Podcast Episode last updated
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Find out the relationship between Hepatitis and
Aplastic Anemia
Aplastic Anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
in this…
Podcast Episode last updated
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AAMDSIF Director of Patient Programs, Leigh Clark, asks Brian about his life before diagnosis, during "watch and wait," through transplant, to now. Listen here to his
myelodysplastic syndromes
myelodysplastic syndromes:
(my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells.…
Podcast Episode last updated
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AAMDSIF Director of Patient Services, Leigh Clark, asks Mario about his journey with
Aplastic Anemia
Aplastic Anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red…
Podcast Episode last updated
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What does this FDA approval mean for patients with PNH? Find out how this oral medication, Fabhalta, could replace one of the infusion treatments in this interview with Dr. Bart Scott.
Podcast Episode last updated
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Here is a discussion about recent FDA approval of Tibsovo for Relapsed/Refractory MDS with Dr. Amir Fathi, who is an Associate Professor of Medicine at Harvard Medical School and the Director of the Leukemia Program at Massachusetts General Hospital.
Podcast Episode last updated
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This episode focuses on the US Food and Drug Administration expanded access approval of luspatercept or Reblozyl with Dr. Guillermo Garcia-Manero, Chief of the Section of MDS in the Department of Leukemia at MD Anderson Cancer Center in Houston.
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Learn about the Americans with Disabilities Act and how it applies to patients. Attorney Chris Mills shares his expertise in this episode.
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What type of documentation do you need to take advantage of the Family Medical Leave Act? Attorney Chris Mills answers questions from Leigh Clark, Director of Paitent Services at AAMDSIF.
Podcast Episode last updated
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Dr. Mikkael Sekeres describes why patients should request a second opinion about their
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired…
Podcast Episode last updated
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Thank you for attending the 2023 Salt Lake City Patient and Family Conference. We will keep uploading presentations as we receive them, please keep checking back for updates.
Presentation Materials:
Predisposition to Inherited Bone Marrow Failure Syndromes
Aplastic Anemia and Non-Transplant Therapies
MDS and Non-Transplant Therapies
PNH and Non-Transplant Therapies
Ask the…
Conference Event last updated
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