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The National Family Caregivers Association's Director of Caregiver Wellness Programs, Jane Meier Hamilton, RN, MSN, has been a nurse for 40 years and family caregiver for 20 years. In a recent interview, she offered advice for family caregivers.
Is it true to say that many people don’t realize that they are caregivers?
Yes, many say things like, “I’m not a caregiver; I’m his…
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What is Complementary and Alternative Medicine (CAM)?
CAM is generally defined as a group of diverse medical and health care systems, practices and products that are not generally considered part of conventional medicine, according to the National Center for
Complementary and Alternative Medicine
Complementary and Alternative Medicine:
A medical approach that is not currently…
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Intimacy
"Intimacy need not end with
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 (begin any time in life) or can be…
disease.…
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Proper nutrition is important to optimize blood production and maintain general overall health. People with
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…
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Coping Emotionally with Bone Marrow Failure Disease
A disease diagnosis is unquestionably a difficult life event. Nevertheless, many patients develop a positive attitude about managing stress and undergoing treatment - and you can too. Your life may now have certain limitations, but it is within your power to learn the coping skills that will help you…
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Why Exercise?
The many benefits of regular exercise have been known for years, and each year new research data supports this.
Apart from enhancing overall health and quality of life, exercise improves physical functioning of your body, improves efficiency of heart and lungs, strengthens and firms muscles, and reduces tension, anxiety and depression.
Daily activity is essential. Be active…
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What fatigue is (and isn’t)
Most patients who are diagnosed with a
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 (begin any…
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On October 24th, 2022 I received the phone call that would change my life. Enjoying a ten minute bubble bath, I initially ignored the vibrating phone along the tub's porcelain edge. My husband had recently embarked on an overseas business trip, and for the first time I was parenting as a single parent. Exhausted, my throat sore, I had just put my seven month old son to bed and wanted nothing more…
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PNH patients discuss their PNH journey by sharing their stories and answering questions from other PNH patients.
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Dr. Caroline Piatek defined PNH, how PNH is diagnosed, the available treatment options, and side effect management. She also answered questions about PNH (Paroxysmal Nocturnal
Hemoglobinuria
Hemoglobinuria:
(hee-muh-gloe-buh-NYOOR-ee-uh) The presence of hemoglobin in the urine.
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The morning of 9/11/01 was a doubly surreal experience for me. I was waiting for an appointment with my doctor at M. D. Anderson's Leukemia Center in Houston while chaos erupted in America. The waiting room was packed, as usual, with people at various stages of their own life-threatening events, and I was struck by the relative calm in this room compared to the state of disbelief and panic…
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Watch this informative patient panel from the 2023 Patient and Family Conference in Salt Lake City, Utah. This session was led by Jill Gahlsford, RN, of Huntsman Cancer Institute.
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Sagar Patel, MD, Huntsman Cancer Institute, explains this post-transplant condition and its treatments. Watch to learn more about techniques used to prevent GVHD as well as short-term and long-term complications.
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Transplant for MDS, or Myelodysplastic Syndromes, from the Patient and Family Conference, Utah, 2023
Ryotaro Nakamura, MD, City Of Hope, explains the reasons why the specialist may recommend a
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 some patients the possibility of a cure.…
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Michael Pulsipher, MD, Primary Children's Hospital, explains the details of
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 some patients the possibility of a cure. But for many…
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Ask the Pediatric Experts: Session from the Patient and Family Conference in Salt Lake City, UT 2023
Suneet Agarwal, MD, PhD, from Boston Children's Hospital answered parents' questions in this session from the Patient and Family Conference in Salt Lake City, Utah. Find the answers to your most pressing question in this recording.
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Charles Parker, MD, AB from Huntsman Cancer Institute explains various treatments for patients with PNH, or
Paroxysmal Nocturnal Hemoglobinuria
Paroxysmal Nocturnal Hemoglobinuria:
(par-uk-SIZ-muhl nok-TURN-uhl hee-muh-gloe-buh-NYOOR-ee-uh) A rare and serious blood disease that causes red blood cells to break apart. Paroxysmal means sudden and irregular. Nocturnal means at night.…
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Paul J Shami, MD of Huntsman Cancer Institute describes the types of therapies that may be used in treating MDS, or
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. Myelo refers to the bone marrow. Dysplastic means…
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Suneet Agarwal, MD, PhD from Boston's Children's Hospital provides essential information for families about inherited
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…
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Srinivas Tantravahi, MBBS, MRCP (UK) of Huntsman Cancer Institute explains which non-transplant therapies may be considered for treatment of
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…
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