Myositis
It is not the length of life but the depth of life - R W Emerson
image by: Myositis Support and Understanding Public Page
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Living with myositis: What you can do to help yourself Part 1
Living with myositis, or any chronic illness, requires certain adjustments. It is important to make healthy choices for ourself - no one else will, no one else can. It is up to us to keep our symptoms under control and take control of our own health with the advice of professional health providers.
Managing myositis starts with proper treatment, including medication and therapy. But there is more we can do to help ourselves each day. These daily decisions may influence the course of our illness: whether our symptoms get worse; whether we stay on an even keel or experience a flare.
Things we need:
•Education. Learning about our illness. This allows us…
Resources
VALOR Study
The VALOR Study is a clinical study for adults (from 18 to 74 years old) with dermatomyositis who are not finding symptom relief with current treatment.
An Elusive Diagnosis, and One That Comes With a Risk of Cancer
What is intriguing is that cancer and myositis often appear around the same time. The cancer is usually diagnosed within a year of the muscle disease; while both may go into remission after treatment, the recurrence of one often augurs the recurrence of the other.
Living with myositis, a mystery to many
The need is especially significant for African Americans and women of color, who are more likely to suffer from myositis. A new analysis from The Myositis Association shows that nonwhite women are twice as likely to die from the disease than others with the same diagnosis, and they are four times more likely to die than white men with the disease.
Living with myositis: What you can do to help yourself Part 1
Managing myositis starts with proper treatment, including medication and therapy. But there is more we can do to help ourselves each day. These daily decisions may influence the course of our illness: whether our symptoms get worse; whether we stay on an even keel or experience a flare.
Myositis Support and Understanding
Myositis Support and Understanding (MSU) is dedicated to improving the lives of Myositis patients through public policy, self-advocacy programs, need-based financial assistance for medical-related expenses, and to provide support and education to patients, caregivers, healthcare providers, the general public, and legislators about Myositis.
MyoNet
MyoNet is a global multicentre, interdisciplinary research project on inflammatory myopathies, myositis. MyoNet involves neurologists, rheumatologists, neuropathologists, pediatric rheumatologists, basic scientists and statisticians, with expertise in genetics, proteomics, epidemiology and clinics.
Myositis Patients Support Community
We are patients living with myositis, here for your support. This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, and mutual support.
Cure IBM
Inclusion body myositis is a rare, little known muscle disease, with no effective drug treatment. Cure IBM is dedicated to inclusion body myositis awareness, education, and research.
Myositis Association Australia
Whatever your interest in Myositis, we hope that your visit here enhances your understanding of the Myositis diseases, their management and the care and support needs of patients and families.
Myositis Canada
To support people with myositis, caregivers, researchers and health care providers in the diagnosis and treatment of, and rehabilitation from, myositis.
Myositis Life
Our mission is to improve the lives of and empower ALL impacted by myositis through education, support, awareness, advocacy, and patient-centered research.
Myositis UK
Myositis UK is a registered charity providing information and support to individuals and their families affected by Dermatomyositis, Polymyositis, Inclusion Body Myositis and Juvenile Dermatomyositis.
The Myositis Association
The Myositis Association strives to provide quality services, improve the lives of myositis patients, find better treatments and, ultimately, a cure for these devastating diseases.
Catalyze A Cure
Our unique position in the rare disease arena is that our research is focused entirely on developing a human therapy for inclusion body myositis
Cure JM Foundation
Cure JM Foundation® is a 501(c)(3) nonprofit organization focused on finding a cure for Juvenile Dermatomyositis (JDM) and Juvenile Polymyositis (JPM), the rare and life-threatening autoimmune diseases collectively known as Juvenile Myositis (JM).
Girl, Interrupted by Polymyositis
This blog is intended to chronicle my experiences with Polymyositis, a chronic autoimmune disease that involves the body's own immune system attacking and inflaming its muscles, resulting in debilitating weakness and other complications.
Inclusion Body Myositis
This web page presents information on inclusion body myositis. There are two main types; a spontaneous type that just strikes "out of the blue." It is the common type, known as spontaneous inclusion body myositis, and is usually abbreviated as sIBM. The second type, Hereditary inclusion body myopathy (HIBM) is a very rare group of inherited disorders; passed on from parents to children. How the two types may be related is unknown.
It's Myositis
I have myositis which is inflammation and weakness in the muscles. The type of myositis I have is called polymyositis (PM) which means it is in many muscles, especially those closest to the body - the thighs and upper arms. There are other types of Myositis including (IBM) Inclusion Body Myositis and (DM) Dermatomyositis. This blog is a view of how it affects every day life.
Living With Myositis
Written by patients, carers and family that have been affected by this horrible disease.
Myo-Musings
Having IBM (Inclusion Body Myositis) means coming to grips with a constantly changing life. The perpetual curtailment of activities requires that you rise above the plight. You need to constantly reinvent yourself in order to adapt to yet another limitation and, at the same time, acknowledge the grieving process that comes with these changes.
Survive Myositis
This website has information on various forms of MD including myositis...
NHS
The main signs are muscle weakness, painful or aching muscles, tripping or falling, and extreme tiredness after walking or standing. If you have any of these symptoms you should see your GP.
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