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The life of pressure is a general input in statistical classical blood. Would you use to be to the The Official? The organization's primary objective is to provide support to people with muscular dystrophy and their families through the provision of a range of services, including counseling, respite services, holidays, youth activities, and independent living and training opportunities.
Muscular dystrophy is a collective term referring to a variety of genetic neuromuscular disorders characterized by progressive degeneration and weakening of muscles. Muscular Dystrophy Ireland was founded in and currently has a head office as well as two divisional offices. In addition to providing supportive services, the MDI is committed to promoting and supporting research, conducting annual general meetings, organizing special youth activities for its younger members, and offering a variety of educational materials including the 'MDI Magazine.
Toll-free: Fax: Background: The Parent Project for Muscular Dystrophy Research is a not-for-profit national health organization dedicated to funding ongoing medical research to find a cure for Duchenne Muscular Dystrophy. Duchenne Muscular Dystrophy is a chronic, progressive, inherited form of muscular dystrophy usually beginning in early childhood; it is characterized by enlargement of muscles, weakness in the pelvis and shoulders, muscular atrophy, and additional symptoms. Established in , the organization's scientific review board is in place to channel funding to those areas currently lacking in research funding.
The Parent Project provides current information on Duchenne Muscular Dystrophy and related disorders such as Becker Muscular Dystrophy through brochures and audio-visual materials. Established in , the organization has a scientific review board in place to channel funding to those areas currently lacking in research funding. The Parent Seeking Guidance 31 Project provides current information on Duchenne Muscular Dystrophy and related disorders such as Becker Muscular Dystrophy through brochures and audio-visual materials.
Scapuloperoneal Muscular Dystrophy, a rare inherited muscular dystrophy that may become apparent early in life, is characterized by slowly progressive muscle weakness of the upper arms and shoulder blade area scapula as well as certain leg muscle groups below the knee peroneal.
Established in , the SPDA provides networking services that enable affected individuals and family members to exchange information, support and resources; promotes basic and clinical research development; fosters communication among related organizations; serves to represent individuals and family members affected by Scapuloperoneal Muscular Dystrophy; and accumulates and disseminates information and materials concerning this disorder. Shriners Hospital conducts research on orthopedic treatment and burn care and trains healthcare professionals in the treatment of orthopedic disabilities and burn injuries.
Established in , the hospitals are substantially funded through the Shriners Hospital for Children 32 Muscular Dystrophy endowment fund. The hospitals treat children with a variety of diseases including but not limited to scoliosis, osteogenesis imperfecta, Legg Calve Perthes, and others. Burns and spinal injuries are also treated.
Shriners Hospital consists of 23 chapters and offers educational materials such as 'Between Us' magazine, '20 Questions,' and 'The Story of Shriners Hospitals. In general, 'neuromuscular disorder' is a term used to describe a group of over 50 diseases affecting the body's motor neurons nerves and muscles. Symptoms may include varying degrees of progressive muscle weakness and loss of muscle mass wasting.
SMDI was established in to provide a non-technical information link for individuals with neuromuscular disorders and for organizations around the world; to link people with other people and organizations concerned with their disorder; to share information to assist people in helping themselves; and to create increased public awareness of this group of disorders.
The Society publishes two biannual newsletters entitled 'SMDI International Newsletter,' a publication for those concerned with muscular dystrophy or the allied disorders and 'Access - Able Information,' a quarterly disability information resource publication. In addition to educational materials, brochures and referrals are available. Relevant area s of interest: Muscular Dystrophy Seeking Guidance 33 Finding More Associations There are a number of directories that list additional medical associations that you may find useful. While not all of these directories will provide different information than what is listed above, by consulting all of them, you will have nearly exhausted all sources for patient associations.
The database comprises some 10, records of organizations, research centers, and government institutes and associations which primarily focus on health and biomedicine. You should check back periodically with this database since it is updated every 3 months. Online Support Groups In addition to support groups, commercial Internet service providers offer forums and chat rooms for people with different illnesses and conditions.
These online self-help communities can help you connect with a network of people whose concerns are similar to yours.
Online support groups are places where people can talk informally. If you read about a novel approach, consult with your doctor or other healthcare providers, as the treatments or discoveries you hear about may not be scientifically proven to be safe and effective.
All patients with muscular dystrophy must go through the process of selecting a physician. The services do not have information on the quality of care that these doctors provide. Again, these lists do not have information on the quality of care that these doctors provide.
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Primary care doctors may also be certified as specialists. NORD maintains a database of doctors with expertise in various rare diseases. The Metabolic Information Network MIN , , also maintains a database of physicians with expertise in various metabolic diseases. While board certification is a good measure of a doctor's knowledge, it is possible to receive quality care from doctors who are not board certified. First, ask if the doctor accepts your health insurance plan and if he or she is taking new patients. If the doctor is not covered by your plan, ask yourself if you are prepared to pay the extra costs.
The next step is to schedule a visit with your chosen physician. During the first visit you will have the opportunity to evaluate your doctor and to find out if you feel comfortable with him or her. Trust your instincts when deciding if the doctor is right for you. But remember, it might take time for the relationship to develop.
It takes more than one visit for you and your doctor to get to know each other. Working with Your Doctor14 Research has shown that patients who have good relationships with their doctors tend to be more satisfied with their care and have better results. Tell your doctor what you think he or she needs to know. Talk about any allergies or reactions you have had to your medications.
If you don't, your doctor will assume that you understood everything that was said. List the most important ones first to make sure that they are addressed.
Download The 2002 Official Patient\'s Sourcebook On Muscular Dystrophy
Some doctors do not mind if you bring a tape recorder to help you remember things, but always ask first. If there is not time that day, perhaps you can speak to a nurse or physician assistant on staff or schedule a telephone appointment. Ask for written instructions. Your doctor may also have brochures and audio and videotapes that can help you.
If you have questions, call. If your symptoms get worse or if you have problems with your medication, call. If you had tests and do not hear from your doctor, call for your test results. If your doctor recommended that you have certain tests, schedule an appointment to get them done. If your doctor said you should see an additional specialist, make an appointment. By following these steps, you will enhance the relationship you will have with your physician. This condition may be the result of eye diseases; optic nerve diseases; optic chiasm diseases; or brain diseases affecting the visual pathways or occipital lobe.