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In An Emergency, Let Them Know You Have LEMS
Lambert-Eaton Myasthenic Syndrome (LEMS) is a rare neuromuscular disorder and medical doctors and staff often have never even heard of it, much less studied about it. Because there are special precautions with medications and myasthenic disorders, it’s important anyone treating you has some understanding of it. This is particularly important in a critical care situation such as being admitted to an ER or going into an Urgent Care facility.
To help provide quick information to your care team in a critical situation, Catalyst Pharmaceuticals (the maker of Firdapse), has developed and distributes a Patient Emergency Card. I think it’s fantastic and fits in your wallet or purse for quick retrieval in an unexpected emergency, or even to hand out to a doctor you feel needs to understand LEMS.
When unfolded, here’s all the information available to your physician.
If you are on Firdapse from Catalyst Pharmaceuticals and you don’t have this card, you can get one. There are three ways. First, contact your PAL (Patient Access Liaison) with Catalyst. You can also request a card by going to Catalyst Pathways. If you are a patient on Firdapse, but not in the Pathways Program, you can request cards from the dispensing pharmacy, AnovoRX, where you get your medication.
If you don’t have a Patient Emergency Card on you when you leave home, I hope you will consider getting one, filling it out with your personal information, and carrying it all the time.
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3 Replies
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Love this post @pricewool!
I think all LEMS patients should have this printed out and in their car and wallet! I know I keep one in my wallet.
However, usually if its a true emergency, first responders won’t have a chance to check your wallet, so It’s still important to have a medical alert bracelet or necklace too!
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I requested mine today. Thank you! I had to go to ER with weakness and it was hard to get the information out to people. This will be beneficial if it happens again in the future to me.
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@marym
I’m glad you requested yours! It’s a great tool to have and to share with our healthcare providers. I’m thinking about printing an extra out to put in the sunvisor of my car.
I used to wear an emergency alert bracelet religiously but have fell off the wagon with that. I know I need to get an updated one and start wearing again.
Do you wear an alert bracelet as well?
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