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Myasthenia Gravis Patient Education

Fatigue and difficulties chewing and swallowing can compromise nutrition in patients with MG. Difficulty chewing results from jaw fatigue as the meal … See more

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Managing Mental Health With ITP

WEBSupporting and being aware of our mental health is so important in everyday life, but it becomes even more profound when we are faced with an obstacle that we …

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How Patients With Myasthenia Gravis Navigate the Mental Health …

WEBPatients with treatment-refractory myasthenia gravis suffer from a substantial disease burden in carrying out their activities of daily living. Fatigue appears ubiquitous …

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Muscular Dystrophy Patient Education

WEBMuscular dystrophy (MD) is a group of genetic disorders characterized by progressive muscle weakness and atrophy eventually leading to disability. 1 There are different …

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Patient Education for Hemophilia

WEBThe NPP suggests 5 major strategies for individuals with hemophilia to help them live longer and healthier lives 3: Undergoing an annual comprehensive …

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Patients With MG Have More Health Issues Than the General …

WEBWhen compared to the general population, patients with myasthenia gravis (MG) experience significantly more difficulties with mental and physical health as well as …

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Mental Health Toll Reported in Patients With Myasthenia Gravis

WEBThe pooled prevalence of depression and anxiety across the 38 studies was 36% and 33% respectively. “According to our results, anxiety and depression are major …

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Social Determinants of Health May Affect Outcomes in Hemophilia

WEBAugust 15, 2022. Social determinants of health are associated with outcomes in inherited bleeding disorders such as hemophilia, according to a systematic review of the literature …

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Overview of Sickle Cell Disease Types

WEBSickle Cell Anemia. Sickle cell anemia, also known as hemoglobin SS disease (HbSS), is the most common and most severe form of SCD. When a mutated beta globin gene (S) …

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Pulmonary Arterial Hypertension (PAH)

WEBPatient Education. Patient education is crucial throughout the course of pulmonary arterial hypertension (PAH), with patients interested in getting high-quality and individually …

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Multiple Sclerosis Patient Education

WEBMultiple sclerosis (MS) is a progressive neurologic disorder characterized by immune-mediated inflammation and neurodegeneration. It affects many aspects of a patient’s life …

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Myelodysplastic Syndromes Diet and Nutrition

WEBEating a well-balanced, healthy diet can optimize blood production and improve or maintain overall health. It is important to eat a healthy diet before, during, and after treatment for …

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The Complex Relationship Between Myasthenia Gravis and Mental …

WEBJuly 19, 2022. Myasthenia gravis is a chronic disease in which antibodies are directed against the neuromuscular junction, causing fluctuating muscle weakness. Patients with …

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How Hemophilia Continues to Affect Patients' Quality of Life

WEBIn Patient Preference and Adherence, Carroll and colleagues wrote, “Individuals living with hemophilia tend to have quality of life (QoL) issues that affect …

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Cystic Fibrosis Patient Education

WEBCystic fibrosis (CF) is a genetic condition that affects multiple organs. 1 Education on this disease involves awareness not only by the patient, but also of their caregiver(s), on …

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Understanding Social Determinants of Health in Hemophilia

WEBA crucial need exists for improved understanding of the effect of social determinants of health (SDoH) and financial hardships among individuals with …

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Integration of Social Determinants of Health in PAH Patient Care

WEBResearchers advocated for the integration of social determinants of health in the care of patients with pulmonary arterial hypertension (PAH) in a study published in …

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Why Did My Insurance Stop Covering My Medication Without …

WEBAlecia Maringola, who waged a lifelong, courageous battle with the rare disease spinal muscular atrophy (SMA), passed away from complications from her …

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Rare Diseases and Poor Mental Health Are Not Cause and Effect

WEBWhen you have a disability, especially a rare disease, you are assumed by society to be depressed, unhappy, and miserable. You are assumed to have low confidence, so low …

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