Coping With Myasthenia Gravis

(I had been gradually worsening due to stress …. felt extreme weakness and had fallen)….
It terrifies me to live in a world where I may fall, shake, be extremely weak, unable to speak, swallow, have double vision, or worse … all because of my disease, Myasthenia Gravis and though I explain it, my symptoms may be perceived as “crazy” or “drunk” and I may be denied care. Anyone with a rare disability could die as a result of such ignorance!

That devastating reality set in when; I had to explain and repeat the name of my disease, Myasthenia Gravis (MG) at least 18 times to the 911 operator ; even more so while, I was being kicked and handcuffed because I could not get up at the officers requests; as I clearly repeat to the 6 officers and 4 EMT/S workers the name of my disease at least 55 times AND call it MG at least 35 times; as I am repeatedly told to, “Be quiet.” and,“Ssshhh” while I desperately try to explain my serious disease and symptoms; and while I begged for the officers to get my medical id card out of my bag; for an ambulance … for somebody to understand my disease and what was happening to me!

The most frightening part- six officers and four EMT/S workers not only had never heard of my NY State recognized disability, they abused and ridiculed my disease; and actually denied me treatment for Myasthenia Gravis, because of their ignorance. The officers claimed I was combative (I am suffering from grave muscle weakness, laying on the floor, unable to get myself up), and declared me EDP (on the DVD that officer claims, “You crazy laying on the floor like that.” “It must have effected your brain…”). When I was eventually brought to Jacobi (still cuffed)…the officers had me there for psychiatric evaluation!! I did speak to a neurologist briefly, and asked him to contact my Neurologist, Dr. Dickoff (really…Yonkers, NY) - he heard that and must have agreed with the officers, left without completing his exam or treating my MG! I was released five minutes after talking to the psychiatrist and was later forced to seek care for MG at Montefiore (where I had a neurological history and had requested the ambulance take me)

When EMT workers finally arrived for me they admitted not knowing what Myasthenia Gravis is…The female officer stated, “ How come he never heard of your disease? …I’m just saying he should know what that is … He should know what that is.” She was still ridiculing me, but she is right: EMT workers should know what MG is!
As humiliating, degrading, horrifying and traumatic as this ordeal was, I hope you will use my story to help increase the publics and health care professionals awareness regarding MG, and to help stop this type of police abuse.