Our organization has thrived on in-person interactions, whether families were visiting MDA Care Centers for medical appointments, we were galvanizing communities through fundraising events, or we were hosting our sleepaway camps for children with neuromuscular disease. These in-person experiences were synonymous with, and integral to, Muscular Dystrophy Association (MDA). Then the pandemic hit, and the world turned virtual.
The rare disease community is especially vulnerable during this pandemic, especially for people with neuromuscular disease. Because of their significant muscle deterioration, people with neuromuscular disease may have increased risk factors, such as reduced respiratory and/or cardiac function.
For rare disease families, there are a few ways to stay equipped with the care and resources needed, even in these tumultuous times.
Rare disease patients depend on nonprofits for information and guidance. Therefore, our first action was to create a virtual hub to house the most up-to-date information and resources for people with neuromuscular disease. These included guidelines that expanded on the CDC recommendations, with best practices specific to high-risk communities.
I encourage people to look to other voluntary health and rare disease organizations social media channels and websites to learn about their virtual offerings. You may find webinars, live events, support groups, and more.
Both patients and healthcare providers had grave concerns at the onset of the quarantine. Would patients still have access to their care teams? Could clinical trials continue if patients could not get in-person monitoring? Telehealth has been 10 years in the making, but all at once the need was urgent.
Telehealth ensures that routine and urgent medical visits can carry on, including patient monitoring for clinical trials. Telehealth can be a learning curve, so do look to webinars and other offerings that can help your family navigate such visits.
Rare disease patients can feel isolated even during the best of times. With the pandemic, these feelings are magnified. Look for ways you can have fun and reconnect during the week, whether it’s virtual movie nights or regular FaceTime and Zoom calls with family.
We recently introduced virtual game nights, known as MDA Let’s Play. Every Saturday, people from across the country join our Discord for a rotation of games, ranging from Fortnight and Minecraft, to trivia.
Thanks to technology, there are a variety of ways for the rare disease community to feel empowered and cared for through the pandemic.