Dealing with Chronic Illness
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In order to maintain healthy lives, people with chronic conditions and their families undertake day-to-day activities to manage their condition. This management often involves understanding and following complex medical regimens, and challenging changes in lifestyle, such as weight loss or increasing exercise. These activities, called Self-Management, involve three different kinds of tasks:
- Care of the body and management of the condition,
- Adapting everyday activities and roles to the condition, and
- Dealing with the emotions arising from having the condition.
Good self-management support involves collaboration between patient and their care provider, one in which the provider is a coach as well as clinician and the patient and family are managers of daily care. Through collaboration patients, family, and providers share information, understand a patient’s goals, and create a plan that all can use to guide care at home and in the clinical setting. Health care systems can support effective self-management by providing care that builds patient and family skills and confidence, increases patient and family knowledge about the condition, increases provider's knowledge of the needs and preferences of the patient, and supports the patient and family in the psychosocial, as well as medical, responses to the condition.
We offer the following national resources as a start in your research and increased knowledge, and therefore your increased power and control, over a chronic illness. Asthma
The Asthma and Allergy Foundation of America (AAFA), a not-for-profit organization founded in 1953, is the leading patient organization for people with asthma and allergies. AAFA provides practical information, community based services and support through a national network of chapters and support groups. AAFA develops health education, organizes state and national advocacy efforts and funds research to find better treatments and cures.
Alzheimer's Disease
Versión españolThe Alzheimer's Association, the world leader in Alzheimer research and support, is the first and largest voluntary health organization dedicated to finding prevention methods, treatments and an eventual cure for Alzheimer’s. Our missionis to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.
Arthritis
Versión españolThe Arthritis Foundation is the only national not-for-profit organization that supports the more than 100 types of arthritis and related conditions with advocacy, programs, services and research. The mission of the Arthritis Foundation is to improve lives through leadership in the prevention, control and cure of arthritis and related diseases.
Cancer
Versión españolAmerican Cancer Society: The American Cancer Society (ACS) is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service.
Cerebral Palsy
Versión españolUnited Cerebral Palsy (UCP) is the leading source of information on cerebral palsy and is a pivotal advocate for the rights of persons with any disability. As one of the largest health charities in America, the UCP mission is to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network.
Crohn's Disease and Colitis
The Crohn's and Colitis Foundation of America is a non-profit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis. Three decades ago, CCFA created the field of IBD research. Today, the foundation funds cutting-edge studies at major medical institutions, nurtures investigators at the early stages of their careers, and finances underdeveloped areas of research.
Chronic Diseases
Versión españolCenters for Disease Control and Prevention: The Centers for Disease Control and Prevention (CDC) is one of the 13 major operating components of the Department of Health and Human Services (HHS), the principal agency in the United States government for protecting the health and safety of all Americans. CDC has remained at the forefront of public health efforts to prevent and control infectious and chronic diseases, injuries, workplace hazards, disabilities, and environmental health threats. CDC applies research and findings to improve people’s daily lives and responds to health emergencies—something that distinguishes CDC from its peer agencies.
Chronic Fatigue Syndrome
Versión españolThe Chronic Fatigue Syndrome Public Awareness Campaign, by the Centers for Disease Control and Prevention (CDC), will offer information and resources for people affected by this illness. Whether you’re a patient, family member, caregiver or health care professional, there will be resources available for you.
Cystic Fibrosis
The mission of the Cystic Fibrosis Foundation — a donor-supported, nonprofit organization — is to assure the development of the means to cure and control cystic fibrosis (CF) and to improve the quality of life for those with the disease.
Diabetes
Versión españolThe American Diabetes Association is the nation's leading nonprofit health organization providing diabetes research, information and advocacy. Founded in 1940, the American Diabetes Association conducts programs in all 50 states and the District of Columbia, reaching hundreds of communities. Find out what is happening in your area. The mission of the Association is to prevent and cure diabetes and to improve the lives of all people affected by diabetes.
Take control of your diabetes by following recommended routine self-care. Click on the links below to download the diabetes self-management booklet mentioned on Remaking American Medicine.
Depression
NIMH, the National Institute of Mental Health, aims to reduce the burden of mental illness and behavioral disorders through research on mind, brain, and behavior. They also provide state-of-the-art mental health information to the public and media about the signs and symptoms, diagnosis, and treatment for mental illness, and where to find local mental health services.
Emphysema
The National Emphysema Foundation was founded in 1971; its mission is to improve the quality of life of patients with emphysema, asthma or related lung diseases with information and education for families. The National Emphysema Foundation supports research and has many advisors who are involved in direct patient care.
Epilepsy
Epilepsy.com is an online resource provided by the Epilepsy Therapy Development Project. Our mission is to inform and empower two groups of patients and their families: those facing newly diagnosed epilepsy, and those struggling with epilepsy that has resisted treatment. The website was created to provide in-depth information about epilepsy and the many treatments that are available for it, in a form accessible to nonprofessionals. We want the site to capture, organize, and make widely available the real-world experience of the doctors and nurses who treat epilepsy and of the families who live with it. Our goal is to use this user-generated content to build upon a foundation of proven scientific evidence and thereby provide an invaluable resource for individuals who need reliable information.
Fibromyalgia
Versión españolThe National Fibromyalgia Association is a non-profit 501(c)(3) organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia by increasing the awareness of the public, media, government and medical communities. The NFA is committed to efforts that will increase FM awareness and improve treatment options for people with Fibromyalgia. With teamwork and dedication, the NFA will continue to grow into a key organization helping people with FM everywhere.
Heart Disease
Versión españolThe American Heart Association is a national voluntary health agency whose mission is to reduce disability and death from cardiovascular diseases and stroke. That single purpose drives all we do. The need for our work is beyond question.
Hepatitis
The Hepatitis Foundation International (HFI) is dedicated to the eradication of viral hepatitis, a disease affecting over 500 million people around the world. We seek to raise awareness of this enormous worldwide problem and to motivate people to support this important – and winnable – battle. Our mission has four distinct parts:
- Teach the public and hepatitis patients how to prevent, diagnose, and treat viral hepatitis.
- Prevent viral hepatitis by promoting liver wellness and healthful lifestyles.
- Serve as advocates for hepatitis patients and the related medical community worldwide.
- Support research into prevention, treatment, and cures for viral hepatitis.
High Blood Pressure Versión español
The American Heart Association's section on high Blood Pressure gives you the facts on high blood pressure and how to live a heart-healthier life. Find out how you can reduce your risks for heart attack and stroke with proper monitoring by a healthcare provider and simple lifestyle changes, even if you have high blood pressure.
High Cholesterol
The National Institute of Health (NIH)'s National Cholesterol Education Program website has information for patients on how high cholesterol can cause heart disease, what cholesterol numbers mean, and how to treat this disease.
HIV/AIDS Versión español
AIDSinfo
is a U.S. Department of Health and Human Services (DHHS) project that offers the latest federally approved information on HIV/AIDS clinical research, treatment and prevention, and medical practice guidelines for people living with HIV/AIDS, their families and friends, health care providers, scientists, and researchers. AIDSinfo offers information on federally and privately funded clinical trials for AIDS patients and others infected with HIV. AIDS clinical trials evaluate experimental drugs and other therapies for adults and children at all stages of HIV infection - from patients who are HIV positive with no symptoms to those with various symptoms of AIDS. AIDSinfo also serves as the main dissemination point for federally approved HIV treatment and prevention guidelines, AIDSinfo provides information about the current treatment regimens for HIV infection and AIDS-related illnesses, including the prevention of HIV transmission from occupational exposure and mother-to-child transmission during pregnancy.
Hospice Care
National Association for Home Care and Hospice: NAHC is the nation's largest trade association representing the interests and concerns of home care agencies, hospices, home care aide organizations, and medical equipment suppliers. Simply put, NAHC is the one organization dedicated to making home care and hospice providers lives easier.
National Hospice and Palliative Care Organziation: NHPCO's Caring Connections consumer engagement initiative offers a wealth of information not only about hospice and palliative care but caregiving, pain, financial issues, and grief and loss.
Kidney Disease Versión español
The National Kidney Foundation, Inc., a major voluntary health organization, seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation. Our goals are:
- Supporting Research and Research Training
- Continuing Education of Health Care Professionals
- Expanding Patient Services and Community Resources
- Educating the Public
- Shaping Health Policy
- Fund Raising
The American Association for the Study of Liver Diseases represents more than 2,700 physicians, researchers, and allied hepatology health professionals dedicated to advancing the science and practice of Hepatology, thereby promoting liver health and optimal care of patients with liver and biliary tract diseases. Patient information includes a Physician Referral Service, facts about liver disease, health tips, and infromation on donor programs.
Leukemia
Versión españolThe Leukemia & Lymphoma Society is the world's largest voluntary health organization dedicated to funding blood cancer research, education, and patient services. The Society's mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.
Lupus
Versión españolWith nearly 300 chapters, branches and support groups in 32 states, the Lupus Foundation of America (LFA) is the nation's leading non-profit voluntary health organization dedicated to finding the causes and cure for lupus. Our mission is to improve the diagnosis and treatment of lupus, support individuals and families affected by the disease, increase awareness of lupus among health professionals and the public, and find the causes and cure. Research, education, and patient services are at the heart of LFA's programs.
Multiple Sclerosis (MS)
Versión españolThe mission of the National Multiple Sclerosis Society is to end the devastating effects of MS. The Society and its network of chapters nationwide promote research, educate, advocate on critical issues, and organize a wide range of programs — including support for the newly diagnosed and those living with MS over time.
Restless Leg Syndrome
The Restless Legs Syndrome Foundation began in 1989 when eight people with RLS began sharing letters and discussing their “rare” condition. In 1993, the Foundation was incorporated as a nonprofit organization to address the growing need for research and information about this unknown condition. Their goals were simple and yet groundbreaking: increase awareness, improve treatments, and, through research, find a cure. Today those goals have taken on a life of their own. Our understanding of restless legs syndrome has also grown. We now know that the condition is not rare at all. In fact, recent research suggests that up to 10 percent of the general population has this neurologic condition. It is perhaps the most common condition you have never heard of, affecting more people than even type 2 diabetes.
