Myasthenia Gravis Has a Face, And it Just Might Look Familiar

As we close out Myasthenia Gravis Awareness Month, I find myself regretting my failure to really promote education about this difficult disease. But the truth is that it is because I have this condition that my physical strength is gone and I find very little reserve with which to work on things like writing blog entries and creating photo collages, memes, and informative Facebook posts that tell my story. You see, Myasthenia Gravis is no respecter of persons in that it randomly strikes at will, regardless of age, gender or race. In my mind, it is a beast which seemingly has a life and personality, with a desire to destroy any and all in its path. In spite of the nature of this illness, with its ultimate destruction at the nerve junction that prevents the message relay from the brain to the muscle which results in devastating and debilitating muscle weakness, it still affects each individual uniquely. It is why we are known in the MG community as snowflakes...no two of us are alike. While it is considered rare, the fight for a cure and research is ongoing, so there is HOPE on the horizon. But as my experience over the past few weeks reveals, there is still not enough knowledge, even among medical professionals.

Over the past month, I have seen just about every "ologist" there is--each referring me to another because whatever is going on is out of the realm of their specialty/expertise. From Rheumatology to Pulmonology, Endocrinology, Radiology, Hematology, Nephrology and Gastroenterology to a Sleep Clinic--I have seen them all. And almost without exception, I am confronted with faces devoid of expression or perhaps even the proverbial "deer in the headlights" look that comes with lack of knowledge about Myasthenia Gravis the moment the words pass my lips. And every single doctor has asked me why I see a neurologist in Houston. Well, when you find the best, you don't change anything. You travel over 300 miles anytime you need her unexpectedly, and for your frequent appointments because--frankly--she "gets it". She knows her stuff. She's not forgotten why she has chosen a lifetime of caring for her patients, nor her oath to "first do no harm". For years, she has been the only doctor to actually perform a physical and neurological assessment at every single office visit. Nope, I will never leave her because, simply put, she's nothing short of amazing. And in the almost 6 years since I have been seeing her, she has never once disappointed me in the quality of her care.

Thankfully, I am slowly but surely finding healthcare providers in my area who are doing more than just typing information into a computer. The 4 new doctors I have seen in the past two weeks have not even had their computers with them...they looked me in the eyes, talked with me, even examined me. I was so amazed that I thanked each and every one of them for caring enough to actually pay attention. I do think that sometimes we forget that as overwhelmed as we are with our conditions, the physicians that oversee our care are just as overwhelmed and just as tired. They are overworked and buried under a load of paperwork and federal regulations that require time away from the reasons they got into medicine in the first place. On the other hand, the lack of knowledge and awareness of diseases like Myasthenia Gravis is staggering. So it is left to us...the patients...to rally the strength to advocate for ourselves and educate others.

The bottom line is this: Myasthenia Gravis is a reality with which roughly 20 in 100,000 people in America struggle, making it a rare disorder. Consider what that means...perhaps not much to the 99,980 people for whom there is freedom from pain, weakness, a fight for each and every breath. But for those of us bowled over by the ravages of this disease, it means a lot. It means multiple doctors, nurses, home health care, monthly or weekly IV or plasmapheresis treatments, daily medications, machines to help us breathe, ports surgically implanted in our bodies, ventilators, wheelchairs, walkers, multiple hospitalizations, catastrophic medical expenses, and worry. Most of all, Myasthenia Gravis has a face. And more than likely, it could be the face of someone you know and love.

For more information, please visit www.myasthenia.org.

God bless you, I love you...
Kathie Lea

"The Lord will command His lovingkindness in the daytime; and His song will be with me in the night, a prayer to the God of my life." ~Psalms 42: 8~