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Since 1983, the
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…
and MDS International Foundation has…
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Clinical research
Clinical research:
A type of research that involves individual persons or a group of people. There are three types of clinical research. Patient-oriented research includes clinical trials which test how a drug, medical device, or treatment approach works in people. Epidemiology or behavioral studies look at the…
is at the heart of all medical advances, identifying new…
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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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Connecting with other patients and families can be a powerful and uplifting experience. Our networks let you learn from others, share your journey, get and give support and make new friends. You have the option of connecting on a one-to-one basis or with a group. You also choose the way you prefer to interact - by phone, in person or online.
Speak…
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Caregiver Stress
Don’t deny or ignore the fact that being a caregiver will have an effect on you.
The stress of caregiving can have a similar impact on the caregiver. “Be aware that being a committed caregiver carries with it physical and emotional health risks. There’s significant data that tells us the stress of being a caregiver can erode and adversely affect the immune system, placing…
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Recent Diagnosis
Parents of children newly 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 time in life) or…
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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…
Basic page last updated
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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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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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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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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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