#MyositisLIFE, a program of Myositis Support and Understanding (MSU)
One challenge in myositis research is expanding community interest. Increased education, patient involvement, and awareness are all paths to potential research opportunities. Now myositis patients and caregivers have a free web platform centered on sharing their experiences publicly to make a difference.
Myositis (Idiopathic Inflammatory Myopathy) is estimated to affect 50-75K people in the U.S. and is one of the rarest of the 80 autoimmune diseases. On average, it takes 3.5 years to accurately diagnose. Factors creating this delay include a lack of typical diagnostic tools and findings, access to care, lack of patient involvement, as well as the rarity and variableness of the disease.
In the years since Myositis Support and Understanding (MSU) officially transitioned from a support group to a fully autonomous patient-led 501(c)(3) nonprofit organization, their dedicated volunteers have seen time and time again that patients find it increasingly important to maintain a sense of who they were before illness, as they fight myositis. Through these interactions, MSU continues to see two important, empowering themes emerge: #MyositisLIFE and #MyositisWarrior!
MSU knows that advocacy without action is nothing and launched its #MyositisLIFE program, which includes a dedicated, interactive, community website just for patients and caregivers to share their experiences and to connect with other contributing authors.
The entire process of sharing is done through user-submitted content. Whether it’s a true, real-life short story, short video, or images that describe an experience, the author can write and submit directly through the website. And, writing experience is not required. MSU always invites creativity!
How does your patient/caregiver experience help?
Your patient or caregiver experiences can help the myositis community, and beyond, in many different ways. Along with the physical challenges, living with myositis affects the financial, emotional, and spiritual lives of patients. It also affects relationships and sexuality. This is #MyositisLIFE.
The myositis patient and caregiver experience encompasses not only interactions with the healthcare side of living with a rare disease, but also incorporates everyday living: disease flares, adapting to muscle weakness, trial-and-error treatment approach, dealing with chronic pain and life-altering fatigue, and learning ways to manage swallowing difficulties, lung disease, and itchy-to-painful skin rashes.
By sharing these stories publicly, patients and caregivers can help:
- influence medical students to specialize in myositis
- influence researchers and pharmaceutical companies to learn more about initiating patient-focused myositis research and clinical trials
- make known patterns and commonalities that need research focus at the patient-led focus
- educate fellow myositis patients and caregivers better understand and know they are not alone
- educate the public about the various types of myositis
- better inform family members and friends about the day-to-day life of patients, including a better understanding of rare and “invisible illnesses”
- build awareness of myositis and associated rare diseases
The #MyositisLIFE program also helps patients convey to people around them the day to day hurdles they cross to maintain their relative health and why it is often important to them to keep a positive attitude; as well as why community and family support is crucial to their treatment plan and success.
These experiences with myositis can help influence medical students to specialize in myositis, or researchers and pharmaceutical companies to learn more about initiating patient-focused myositis research and clinical trials. And, they help family and friends to better understand what life with myositis is like.
MSU encourages patients to be their own best advocates at every level of healthcare from physician and ER visits, to dealing with insurance company authorization and appeals. Being a #MyositisWarrior is not just about taking care of one’s health; it’s about never giving up.
MSU is proud to be a frontline advocate talking to pharmaceutical companies, doctors, researchers, other rare disease patient advocacy groups, and healthcare community members about issues facing myositis patients.
Stakeholders who know and understand more about the lives myositis patients live, will be better able to involve them and treat them effectively, with compassion, and with shorter time to diagnosis and hopefully, eventually, remission… and one day, a cure.