Myasthenia Gravis is called the "snowflake" disease because even though we all have many things in common, there are no two cases of MG that are exactly alike. So yup, I'm a flake.
There is no cure for MG.
Because there is no famous spokesperson for MG (i.e. Michael J. Fox for Parkinson's) there is not a ton of attention drawn to it. That's why I try to hit it pretty hard in June, National MG Awareness Month.
Taking medication for the MG to control the symptoms lowers your immune system to the point that if you get a common cold, you could easily end up in the hospital and die.
Those same medications can also lead to side effects (diabetes, osteoporosis, osteoarthritis, liver and kidney function problems) that then force you to need OTHER medications.
WITH insurance, I've already paid over $4000.00 in prescriptions this year. WITH insurance. Without, I can't imagine.
Many, many people have never heard of Myasthenia Gravis. I was one of them.
Many DOCTORS have never heard of Myasthenia Gravis. Especially non-neurologists, but even some of them. If you happen to find a doc that's NOT a neuro and knows about MG, you've kit the jackpot.
One in seven babies born to a Myasthenic mom will be born with transient neonatal myasthenia gravis. Jacob was. He was in the NICU for 35 days. Everything you read about this talks about AChR receptors, but I am not AChR+, I am MuSK+. Jacob was about worst case scenario for neonatal MG. Thank the Lord he will never have to deal with it again.
MG effects every facet of every area of your life: your friendships, your marriage, your employment, your ability to be independent, your ability to breathe, talk, swallow, chew, walk, stand, blow dry your hair, read or write for long periods of time, the ability to pursue hobbies that you once loved....it can kill, steal and destroy.
June is National Myasthenia Awareness Month. Please join me in praying for a cure. To learn more, or for donation information, go to www.myasthenia.org.