Do you care for someone with Myositis? A spouse, parent, child or friend? Myositis is a lifelong battle full of ups and downs; often with stretches of good health which can be cut short by flare-ups (also known as “flares”) of the disease. The uncertainty of the disease can affect your life just as much as it does the life of the person with the disease. Learning all that you can about Myositis is beneficial to both you and the patient.
LEARNING ABOUT MYOSITIS
Information is a powerful tool. It can help you understand the symptoms, restrictions and needs of a patient and help you communicate better with doctors. Learn as much as you can from trustworthy sources. While the internet is a great tool, always check your sources to make sure the information is accurate and up-to-date. Here are some ways to improve your knowledge:
WEBSITES:
- Myositis Support & Understanding: www.understandingmyositis.org
- The Myositis Association: www.myositis.org
- Muscular Dystrophy Association: www.mda.org
IN-PERSON SUPPORT GROUPS:
Both TMA and MDA offer in-person support groups where both the patient and caregiver is welcomed:
- TMA’s KIT (Keep In Touch) Groups: http://www.myositis.org/support-group-search
- Muscular Dystrophy Association http://mda.org/services
ONLINE SUPPORT GROUPS:
- Myositis Support & Understanding Family & Friends: https://www.facebook.com/groups/myositisfamilyandfriends/
- Inclusion Body Myositis Caregivers: https://www.facebook.com/groups/247318032126218/
How has knowledge of the disease helped you as a caregiver?
Tags: caregivers family support
