Message from a child living with Juvenile Dermatomyositis
May 14, 2017
BENEFITING: MYOSITIS SUPPORT AND UNDERSTANDING ASSOCIATION
EVENT DATE: May 01, 2017
Myositis Support and Understanding is a 501(c)3 nonprofit organization founded by Myositis patients, for Myositis patients. May is Myositis Awareness Month, our largest opportunity to raise awareness, spread educational resources, and fundraise to ensure we have funds to continue to provide our current programs and services and to build upon our mission and create new opportunities for myositis patients. This year our awareness theme reflects on how myositis, as a rare disease affecting approximately 50-75K in the U.S., is a very complicated chronic illness. No two patients, even with the same form of myositis, experience the same symptoms, complications, or response to available treatments. There are many less rare diseases that mimic myositis and therefore getting an accurate diagnosis is often years in the making. This is why our focus this year is how, "With Myositis, Sometimes Zebras Have Spots." The zebra is a well-known representation of rare diseases. There is a saying in the medical community, "when you hear hoofbeats think horses, not zebras." This means that doctor were being taught to look for the most common cause of a patient's symptoms (horses) while with Myositis, we need them to think zebras (rare diseases). The ’Spots’ spots indicate unique aspects of how patients and caregivers experience myositis in many different ways including complications, hardships, how it affects everyone surrounding the patient, the creativity of patients in creating and building their own assistive devices, etc. We ask you now to please give generously this year as we have many plans in moving forward. Using new technologies will help us reach more and more patients to ensure they have the support and assistance they need to live with this rare, isolating, autoimmune disease that has no cure, very few treatments, and with Inclusion body myositis, no treatments at all. Your help will ensure that patients are not left on their own in seeking a diagnosis and treatment from inexperienced physicians and other healthcare providers. Getting an early diagnosis is key for patients to potentially live a better life with myositis. Each day a patient goes undiagnosed is another day myositis wreaks havoc on their bodies. You can, and will, make a difference by making a contribution to MSU!