This is a post from last year during National MG Awareness Month. It bears repeating.
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.
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.
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.
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 hit the jackpot.
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. Jacob was about worst case scenario for neonatal
MG. Thank the Lord he will never have to deal with it again.
Everything you read about this talks about AChR receptors, but I am not
AChR+, I am MuSK+. Because I have MuSK+ MG, or MMG, I am 7 out of a million. There needs to be SO much more research done on MuSK+ 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.
National Myasthenia Awareness Month. Please join me in praying for a
cure. To learn more, or for donation information, go to