May is Myositis Awareness Month and we want to introduce our brand new website where your experiences get the attention they deserve and can truly make a difference.
The myositis patient and caregiver experience encompasses not only interactions with the healthcare side of living with this rare disease, but also incorporates our everyday living; getting through a flare, adapting to new weakness and limitations, trying off-label medications (often with harsh side effects), dealing with chronic pain and life-altering fatigue, and learning ways to manage swallowing difficulties, lung disease, and itchy-to-painful skin rashes.
Aside from the physical challenges, living with myositis affects the financial, emotional and spiritual lives of patients. It also affects relationships and sexuality.
According to physicians and researchers we have talked to, one of the biggest challenges in myositis research is getting people interested in the idiopathic inflammatory myopathies, generally referred to as myositis.
Sharing our #MyositisLIFE is one powerful way we can help. By sharing how myositis affects us, we may be able to influence medical students to specialize in myositis, or researchers and pharmaceutical companies to learn more about funding myositis research and clinical trials. Awareness is a path to potential research, but we need your help to make a breakthrough.
Read patient and caregiver experiences AND share your own #MyositisLIFE story, short video, images, and memes at MyositisLIFE.org.
Learn about myositis from those who live it each and every day. Share your experiences today!
Also, visit our Awareness page for more ideas and ways to get involved!
Tags: myositis awareness
