Can You Die From MG? Absolutely!

 One of THE most frustrating things about having Myasthenia Gravis is the lack of knowledge on the part of medical personnel. Going to the ER in a myasthenic crisis (short of breath, overall weakness, can't swallow, choking on your own saliva, maybe really low oxygen, etc.), is truly taking your life into your own hands. Most ER docs know next to NOTHING about Myasthenia Gravis. I understand that doctors can't know everything about every disease out there, but then they should at least LISTEN to the patient when they present with something they are unfamiliar with.

If you Google Myasthenia Gravis, you will most likely read that it does not have a cure, but with treatment, most myasthenics can have a fairly normal life. They are WRONG. Most sites will also say that you cannot die FROM MG. They are LYING. Two cases in point:

I met a wonderful young mom on Facebook at possibly the worst time of her life. Her beautiful daughter, Safa, had just died from Myasthenia Gravis. The Mom, Jessica, had sought emergency medical treatment for her daughter on more than one occasion. She ended up being diagnosed with MG, but the doctors didn't seem terribly concerned. Jessica looked it up online, and read the things I mentioned above. Fairly normal life, don't die...

Well, treatment for Safa came too late. She passed away when she was in a myasthenic crisis. She just got too weak to breathe. Safa was six years old. Safa died FROM MG.

A precious friend of mine, Jen, struggled with quite difficult-to-treat MG. She was a fierce advocate for others who didn't feel like they had a voice, or that they could navigate the medical world alone. Jen took Mestinon, a very common medication that helps probably 80% of folks with MG.  It never did a thing for me. But I have a different type and MG than most. Jen got weaker and weaker over the years she battled this hideous disease, that she needed oxygen 24/7, and had to set timers to take her Mestinon. She would get so weak that she would have a very difficult time breathing if she missed a dose. 

One night, during the middle of the night, she missed her alarm. When her husband woke up, Jen wasn't breathing. Her husband and 16 year old SON had to take turns giving her CPR. She did not recover. She was just over 40. Jen died FROM MG. 

And there are so many more.

The ONLY reason Safa died, and the ONLY reason Jen died, was because they had a neuromuscular disease named Myasthenia Gravis that people just didn't know enough about. 

So when I tell people I have MG, IF they go to look it up, they might think back to a conversation we had a month before, and think, it's not THAT bad. What a drama queen. 

Well I'm hear to tell you loud and clear:  It IS that bad! People like me, with an invisible disease, get judged, stared at, talked about, etc. I've even had friends that had nasty notes left on their cars for parking in handicapped. The have NO clue that when that person, who looked "normal" and healthy on the way IN the store, may very well come OUT of the store gasping for breath and looking like they are half dead. They may have slurred speech, which leads people to assume they've been drinking. 

I literally carry a card in my purse that says, "I'm not drunk, I have Myasthenia Gravis." I carry papers in my purse that have ALL of my medications, surgeries, doctors, emergency contacts, and medical allergies on it.  It's 2 pages, typed. Every time I go to a doctor appointment, hospital, anything...I just hand them the paper. I made copies so they don't have to copy it, which they are very appreciative of. I do it more for me than them, if I'm honest. I cannot sit through a medical assistant butchering the names of my medications one. more. time. It's painful. And it takes forever. 

Myasthenia Gravis is no joke. I have lost countless friends over the years to this insidious disease (that you can't die from {eyeroll}). I've had MG for over half my life now, 27 years. When many of your friends have an incurable neuromuscular disease, you'll have more friends that die. And it breaks my heart every. single. time.

So listen y'all. If someone LOOKS okay to you, it doesn't mean they are.  I want to look nice if I go somewhere. So I put on decent clothes, I do my hair and put make up on, and go to the store, or meet someone for lunch. But after a couple of hours, I may start feeling really weak and tired. If something you read online (because *everything* on line is true) that says it's not that serious, PLEASE don't assume it's not. TALK to your friend that has MG, or MS, or MD, or lupus, or.... You get the point.

And to all of my precious readers: NEVER take your life, your family, your loved ones, your ability to breathe easily...for granted. I KNOW I did when I was younger.  I try very hard not to take any of those things for granted anymore.  Because I know what it's like not to have them.