Resources for Myositis patients and caregivers
A helpful and informative listing of needed resources
Myositis is a complicated disease that may be disabling, cause chronic pain, and mental health disorders such as depression. We have put together an extensive listing for each of these categories.
Since Myositis comes with many “side-effects,” we have put together an extensive listing for each of these categories, as well as resources for caregivers/care partners and veterans.
If there is a resource we are missing, please feel free to contact us with the information. Our goal is to provide you with appropriate resources that can help you.
Myositis resources are helpful to Myositis patients. These resources include other helpful organizations, companies that provide products we have tried or have been recommended to us, and information about other autoimmune diseases that like to “tag along” with Myositis.
Caregiver/Care Partner resources include helpful information about other organizations that can assist caregivers in staying healthy and learning options to provide them with help. These also include other support groups and ways to keep family members updated.
Myositis is an often disabling disease requiring patients to leave the workforce and apply for social security disability. Our disability resources provide the necessary information patients need to navigate the system and learn about their rights.
We thank Veterans for their service! We have put together these resources to help veterans get the help they need and provide them with their options under the VA. You do not need a service-connected disability in order to receive health benefits from the VA.
Are you a Myositis patient in need of financial assistance?
MSU has a financial assistance program for you
Myositis often causes financial hardships for patients. This is partly due to the rarity of the disease, as well as costly prescriptions, medical bills, and other health-related expenses.
Also, many patients live in remote areas where doctors are not exposed to Myositis, thus necessitating travel to visit a specialist who knows more about Inflammatory Myopathies.
Good news! We offer financial assistance for all of these things, and even household-related expenses.
While not everyone with Myositis will experience chronic pain, it is estimated that roughly 40% do. A physician at Johns Hopkins Myositis Center told us that about 50% of their patients present with muscle pain. We have put together resources to help with pain.
Mental Health Resources
Living with a chronic illness such as Myositis makes life difficult. We experience ups and downs, life-changes, and we may feel we continue to lose so many things over time. Never be ashamed to admit you are depressed! Here are resources you may need.
Prescription Assistance Programs
There are times when we may need assistance for the prescription drugs we take to treat the rare disease Myositis. We have included a list of some of the more popular programs that may be able to help you obtain saving on your prescriptions.
Join our email updates and newsletter
Subscribe to our general myositis-related email updates. If you are a member of MSU, you will automatically recieve these updates and there is no need to subscribe here. To register for your free MSU membership and access to The Myositis Community Network, visit UnderstandingMyositis.org/register