Does the name Myasthenia Gravis sound slightly familiar?

Probably not, but if you’re a fan of the show #Empire, you came across it when Lucious Lyon was famously diagnosed with this autoimmune disorder instead of Lou Gehrig’s disease.

But for many of us, Myasthenia Gravis (or MG) is a daily struggle that can’t be as easily discounted as Lucious did when he made a full recovery with minimal effort on the show.

There is a lot of information out there regarding MG. Almost none of it is written from the perspective of the patients who live with it.

By the time we get our diagnosis, we’ve all been to numerous doctors and heard countless statistics. Although much of the data may be true in textbooks, out in the trenches, it’s another story.  My knowledge is experiential but just as important as studies.  It isn’t as clinical, but it is our reality.

To cut through all the clutter, here are 5 True or False Facts You Need to Know About Myasthenia Gravis:

1. In the early 20th century, the mortality rate of MG was around 70 percent. Doctors now estimate that, when treated properly, these days the mortality rate should be zero.

False-ish. The thing is, although death from Myasthenia due to crisis is on the low end, it isn’t completely uncommon.  Serious complications due to long term use of immunosuppression drugs and long term steroids are another matter.

2. The symptoms of myasthenia gravis may include eye muscle weakness, eyelid drooping (ptosis), blurry or double vision (diplopia), unstable gait, a change in facial expression, difficulty in swallowing, shortness of breath, impaired speech, and weakness in the arms, hands, fingers, legs, and neck.

True. But they forgot about brain fog, memory loss, and inability to chew.  In most cases I’ve seen, there is a variation all the symptoms at some point to different degrees.

3. The average time from first onset of symptoms to diagnosis is 1.2 years.

False. At least from anyone I’ve talked to and all of my doctors.  Since this is a disease that is most prominent in young women, the average time to diagnose is at least two years.  Side note:  Most women I have interviewed, myself included, start their diagnosis process with a doctor recommended psych evaluation because our physicians don’t believe our symptoms are physical.

4. Myasthenia gravis affects about 20 per 100,000 people.

Not sure how true this one is currently.  Although the rate itself my not be is increasing, I believe the numbers are growing do to awareness and better medical training.

5. MG occurs about one and a half times more often in women than in men.

True in every journal but this one. I’ve actually never known a male with MG although men are in most of pictures of Myasthenia Gravis I’ve seen on the internet. Research is trying to determine if female hormones play a part in why the disease is so prominent in women.

Again, my knowledge is experiential and I am no medical statistician, but as you can see, the clinical information is slightly off compared to reality.

The important thing to remember is that statistics are simply a compilation of a bunch of information.  Everyone is different.  Those with Myasthenia are called Snowflakes because every diagnosis is a little different as are our symptoms.  Never assume that because it is written, so it shall be.  And never give up the fight.  Never, ever.