by Lorelei Cohen

Created on: September 18, 2009   Last Updated: April 09, 2011

Being diagnosed with any illness can be devastating but being diagnosed with a rare illness can bring a lot of issues to light that would not otherwise occur. That was my experience when at the age of twenty-six I suddenly found myself disabled by an illness that not too many medical professionals knew much about.

When the illness first hit me, it hit me hard, I went down like a rock. My muscles and joints stiffened up, my mind became cloudy and confused, I was extremely fatigued, and I was having difficulty swallowing and breathing. I also developed nodules on my finger joints and up the tendons on my arms. I became extremely sensitive to the cold.

I was diagnosed as having severe Rheumatoid arthritis even though there were aspects of my illness that did not quite fit in with this diagnosis. Various anti-inflammatory drugs were tried and a course of steroids was used. My problems continued to persist. My family doctor knew that there was muscle involvement, and he kept searching for a link as to why, two years later it was discovered. A test found JO-1 antibodies within my immune system.

JO-1 antibodies are very rare. Unfortunately rarer illnesses did not tend to have a lot of research dollars put into them back then. There was very little known about JO-1 antibodies, and some of the information that was, would turn out to be inaccurate. What was known was that most individuals with JO-1 antibodies had either polymyositis or dermatomyositis. Broken down this simply means poly - muscle, myo - inflammation, sitis - inflammation, or multiple muscle inflammation. Dermatomyositis was a form of polymyositis that also included skin inflammation.

The Rheumatologist that I was sent to see ran a series of tests, and then told me that I did indeed have polymyositis, but that I should not be having breathing or swallowing difficulties as they were not a part of my illness. I was also told that he did not understand the dopiness or severe fatigue issues either. Despite my telling him that I was in severe pain, in his report he wrote that I was not, this being because I did not feel pain when he pressed on the nodules on my fingers.

Over the next few years I was to discover that a number of health professionals would make the error of lining my illness up with the symptoms of either Polymyositis, or Rheumatoid arthritis rather than realizing that JO-1 antibodies were a distinct diagnosis in their own right, and one that would have to be treated accordingly. I was in for

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