Column logo

I have had to go to the same clinic twice for medical issues in the last few months. This can be stressful as a rare disease patient because my condition is very complicated, and I am on many uncommon treatments. Ideally, it is best to see specialists that know you, but sometimes you need same-day care at an Urgent Care or ER. I know when I roll into that space I am a zebra patient unlike what they are used to. For me, it’s important to be prepared and extremely knowledgeable about my disease and treatment when seeking care in those spaces. 

A couple of weeks ago I had to go to Urgent Care for an infection. I had never had anything like what I was experiencing, so I was feeling trepidation about what would happen. I had to see a doctor who didn’t know me because my primary doctor was unavailable. I was concerned when he told me I needed antibiotics. I have never had to do a full course of antibiotics in all the years I have had a severe case of myasthenia gravis (MG). 

One of the most important things all MG patients need to know is the list of medications, especially antibiotics, that are dangerous for us. Some even have black box warnings. I wrote an article about this topic because it is so essential that all MG patients know about this list. The antibiotic the doctor prescribed was one I could not take. Yet, I had already discussed with my MG specialist years ago what antibiotic to take if I did ever need one. She said penicillin-based antibiotics are considered the most safe.

Read about treatments for MG

Thankfully, I already had this conversation and knew what I needed. I informed the doctor, and he changed the type of antibiotic he prescribed. I know when I go into a general care medical setting the medical staff will not know these important details about my disease.

I had to go to the same Urgent Care a few months ago when I tested positive for COVID-19. I had already discussed with my specialist what to do if I ever tested positive, and she said to get the antiviral right away. Unfortunately, it was a Sunday when I tested positive, so I needed to go to a general care clinic. My vitals were concerning when I went in, but I tried to assure the medical staff I was not in an emergency. My conditions were just reacting to the virus.

Even though the doctor didn’t know me, he was very patient when I explained the complexity of my condition. He went through my long medication list to see what medications would interact with the antiviral. I only go to the Urgent Care and the emergency room connected to my medical group where nearly all my specialists are. This way my medication list and medical history are available to doctors treating me for the first time. 

I imagine going into general care settings with new doctors is stressful for all rare disease patients. You’re never sure if the medical staff have heard of your disease or what details they may know about it. Over the years, I have learned to become an expert on my rare disease and how to communicate with doctors.

I always keep the list of medications that can be dangerous for MG patients on my phone, and I am always prepared to discuss how suggested treatment could interact with my disease and other treatments. All rare disease patients must know their health is in their own hands and need to always be active participants in their own care. This can be especially true when in generalized care settings.