Jessica

Jessica
Brooklyn, NY
Diagnosed with Polymyositis in 2004 and Idiopathic Thrombocytopenia Purpura (ITP) in 2006

 
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How has your condition impacted you?
Well, now I can look back and count myself lucky because the progression of my disease was very slow, my doctors recognized it early, and I responded well to medication.  A couple of years ago was pretty difficult as not only did I have to deal with a loss of physical strength but I also had to deal with a loss of identity.  I've always identified as a strong person, able to do anything on my own, and this disease has put a serious crimp on that kind of thinking.  It is something I still struggle with now.  In other ways, my life is better since I take much better care of myself. I  eat better and really know the importance of regular exercise and sleep.
What would you want people to know about your condition?
Well, there is the obvious that you can't always tell if someone is disabled.  Polysyositis is a muscular inflammatory disease where your immune system attacks and breaks down your muscle tissues.  They don't know what causes it or how to really treat it so they just suppress your immune system with powerful (and sometimes dangerous) drugs.  Research is being done. The Myositis Association has some pretty good information (and they accept donations) at www.myositis.org.

What would you want to tell someone who is newly diagnosed with your condition?

It is very important to find a good doctor, one that you can work with and listens to you.  You'll be seeing that doctor for a long time and they'll be asking you to do things you don't want to do.  It's best to have someone who is willing to explain things thoroughly and who you feel hears your concerns.  Also, what you eat and how much you sleep can make a HUGE difference in how you feel.

Thank you so much Jessica!!