Rare Diseases and Preparing for an Emergency

Medical emergencies are certainly no fun, especially when a rare disease is thrown into the mix. However, being prepared for a potential emergency can make a nightmare of a situation slightly more manageable to navigate.

One of my specialists recently told me, "If you have any sinus issues or a sinus infection, you cannot be treated by just any doctor at urgent care. Your sinuses are so complicated after your multiple surgeries. You need to call me."

"Okay, sure, no problem," I thought. But then I thought about it further.

What if I am in a true emergency?

What happens if I'm in a true emergency situation and cannot speak for myself, AND I'm also experiencing a sinus issue? This may sound far-fetched, but honestly, weirder medical things have happened to me.

That's when I started exploring resources that might help in an emergency. Within each of the medical information tools that I created, I listed several things:

1. My name and age (or birth date
2. My multiple autoimmune conditions and other reoccurring issues I am prone to having
3. Recent medical procedures
4. Allergies/food restrictions
5. List of medications I'm currently taking
6. Instructions on which specialist to contact depending on the emergency
7. Two emergency contacts (who also have their own set of information if they need it)

What tools help me prepare for an emergency?

Medical card

I have a slip of paper with this information that I keep in my wallet near my insurance card and ID.

Email to emergency contacts

My emergency contacts have an email containing my medical card and doctor information in case they need to jump in and help.

Health app

The Apple Health app has a handy feature called Medical ID, which can be accessed in the locked screen and during an emergency call. Users can write as little or as much information as they would like, and mine contains all of the information I list on my medical card. Also, when using Emergency SOS to call emergency services, the app automatically sends an alert to my emergency contacts with my current location. (Note: be aware that technology features are always subject to changes and glitches)

Emergency medication

When I go on trips, I always bring a bag of emergency medication in case a reoccurring issue flairs up or a medication gets misplaced or damaged. My emergency contacts know where it is stored in case someone needs to get access to it for me.

Family medical history list

There are so many conditions in my family; I can never keep them all straight. There was a time when I was hopping from one primary care doctor to another as my insurance changed every year, and this became a helpful tool when talking with new doctors.

List of important dates

When was I diagnosed with my second autoimmune condition? And was that third surgery in 2021 or 2022? Time seems to escape me, and I know that my poor memory for dates would have no chance in an emergency situation. A list can be handy.

Other resources for emergency preparedness with a rare disease

An additional option is a health binder. I have some friends in the community who created a binder of health information (specialist information, test results, letters from doctors, etc.) which they keep in their car. Living in New York City, I only use public transit, so this type of tool is not practical for me to carry around all day. But I may work on putting together a digital version to store on my phone.

It's also a good idea to revisit and update this information every year or sooner if there are health changes, surgeries, new conditions, etc.

What tools do you use to prepare in case of an emergency?

I truly hope I never need to use these tools, but I'm glad they are available just in case. Do you have additional tools that you've created in case of an emergency?

Please feel free to share in the comments - your idea could have a major impact on someone's else care.