Myositis Awareness Month
For individuals living with myositis, a trip to the emergency room (ER) can be especially challenging. Symptoms can be complex, rare, and unfamiliar to many healthcare providers who don’t usually care for those with myositis. In these high-stress, time-sensitive situations, clear communication and accurate information are essential. That’s why The Myositis Association (TMA) has developed a set of resources that will help you and your healthcare providers navigate urgent care more safely and effectively.
TMA’s Resources for an Emergency are designed to provide concise, reliable information about myositis for use during urgent or emergency medical situations. These materials are downloadable and include:
- A wallet-sized Myositis Emergency Card where you can document essential information and carry it with you
- Before You Dial 911: The 411 on Myositis in the ER – One-page guidelines for what you can expect when you go to the ER
- My MyoHistory where you can add your own information that will streamline the process of telling your story to providers when time is of the essence
These tools serve as a bridge between specialized knowledge and emergency care, ensuring that all critical information is available when it matters most.
TMA encourages patients, care partners, and families to download, print, and keep these resources readily available. Here are some practical ways they can be used:
- Keep It Accessible – Store a printed ER card in your wallet, purse, or medical folder. Some patients also keep a copy in their phone or share it with a care partner.
- Bring It to Every ER Visit – In an emergency, present the documents to EMS personnel, intake staff, nurses, or physicians. This ensures that your condition is immediately understood, even if you are unable to fully communicate.
- Use It as a Communication Tool – The resource can help guide conversations with emergency providers, ensuring that important details—such as medication sensitivities or risks—are not overlooked.
Why These Resources Are Important
Myositis is a rare and often misunderstood disease, and many emergency room clinicians may have little or no experience treating it. In urgent situations where quick decisions are required, this lack of familiarity can lead to uncertainty or missed considerations, such as the risks of respiratory muscle involvement or complications related to immunosuppressive therapies.
TMA’s Resources for an Emergency provide a concise, medically reviewed snapshot of essential information, helping guide safe and appropriate care when there is no time for guesswork. They are especially critical when patients are unable to advocate for themselves due to severe weakness, pain, breathing difficulties, or altered mental status, effectively serving as a voice in those moments.
By clearly outlining important precautions, medications, and potential risks, these resources can also help prevent complications that might otherwise arise from well-intentioned but uninformed decisions. Just as importantly, they empower patients and care partners with a sense of preparedness and peace of mind, offering reassurance that they have a reliable tool to support them in even the most stressful situations.
Making ER Preparedness Part of Your Routine
Using TMA’s Resources for an Emergency is a simple step that can have a profound impact. Consider incorporating them into a broader emergency preparedness plan:
- Review the information regularly and keep it up to date
- Pair it with your medication list and physician contacts
- Inform family members or caregivers where to find it
- Discuss it with your healthcare provider during routine visits
- Keep them in a place where you will remember to grab them when needed, such as in a “go-bag” or stuck on the refrigerator door
Download your Resources for an Emergency today and keep them close. In an emergency, they can make all the difference.
TMA’s Resources for an Emergency were developed together with members Kambiz Roghanchi and Jen Swisher, an emergency medicine physician assistant, both of whom live with dermatomyositis. We are grateful for their inspiration and thoughtful contributions.
