Body Betrayed | Body Disabled

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Monday, March 7, 2016

Rare Disease Awareness Month

I want to raise awareness about Myasthenia Gravis from a different perspective: officially published "MG Fact Sheets." I appreciate the information provided, but some wording needs improving, especially the part about, "people with MG can live normal or near normal lives with medication." This seems to be the main fact people remember. For the 100's of people I am in contact with in support groups, this is not the case.

For those of us who have severe Myasthenia Gravis, some "MG Fact Sheets" make life more difficult. I have a good team of doctors who understand MG and a great wife and family who know the effects MG has on me, but others do not. Here are some problems these "MG Fact Sheets" can cause.

Doctors and emergency room staff unfamiliar with MG often read these "MG Fact Sheets" and may tend to think that MG is not that serious then mis-treat or under-treat people with MG. I know of several people who have experienced this. I have had to educate doctors myself about what to and not to do about MG. YES, there are many doctors who have never treated a MG patient. Remember, MG is a rare disease.

Those who have poor family support really have a difficult time getting family members to understand how difficult their disease is when Foundations state, "people with MG can live normal or near normal lives with medication." In my MG circles, few do. It may be that I am in contact with people who have more severe cases. I have heard from many individuals on various support groups that experience the problem of lack of family support and understanding. They often say, "My family thinks I am just tired, or lazy." "Get up and do your work, you're normal." Just try to explain MG fatigue to an uncompassionate boss who has read the "MG Fact Sheets." You're fired!

Occasionally, "MG Fact Sheets" make the whole process of applying for and obtaining Social Security disability more difficult. Yes, I know that receiving disability is defined and governed by the Social Security Blue Book (Section 11.12), but that does not stop the case worker from reading a "MG Fact Sheet" and seeing "most people can lead normal to near normal lives with medication" then disapproving the application. Think it can't happen? I was disapproved the first time because I was a pastor and only worked one hour a week when I preached on Sunday--as the Social Security case worker told me! True story.

People still die from MG. I and others have lost too many FaceBook friends to MG over the past few years. This is a sobering reality that people do not want to face, but it is true. Yes, the mortality rate has drastically declined and that is great, but people still die from MG and its complications to be more specific. I would be dead now if it were not for the treatments I receive. But, I am still alive and plan to be.

People can live a normal or near normal life with medication. Well, I guess that is true if normal or near normal is redefined. Just ask someone with a severe case of Myasthenia Gravis.

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