I Am Rare

What I want others to know about my experience with Erdheim-Chester Disease.

By Janet Bunge
Kentucky – September 10, 2018

In early 2015, after ten years of “What is going on, and I really am not a whiny woman,” I was diagnosed with Erdheim-Chester Disease (ECD).  The first article I read said that I’d be dead in three years.  Well, it’s been three and a half years, and I’m still very much alive, so here is the short story.

Every description of ECD begins with “very rare.”  Articles may include blood cancer, abnormal growth of white blood cells called histiocytes…yada yada.  My main oncologist is at Memorial Sloan Kettering (MSK) because Dr. “Brainiac” Diamond researches ECD as his life’s work.  I’ve been seen at Mayo Clinic, National Institutes of Health, Duke University.  Also, I have spoken, written, and been interviewed at MD Anderson and MSK.  I’ve just been taken off of my third chemotherapy in the last three years because of side effects.  Even though I consider Dr. Diamond to be the top doctor in my repertoire, I am followed by at least a half-dozen of doctors at the University of Kentucky.  I think that I have the distinct pleasure(?) of being the first ECD patient at UK.

I’m grateful for life, and I’m less than grateful to have a chronic disease that is really cancer.  So many consider this to be a cancer that is treated, you might be very sick, then it’s over.  Has my life changed?  Yes!  I can’t work in my field as an RN since my stamina is limited.  As Dr. Diamond told me, I have been reworked, so the dizziness is here to stay.  As a former NICU nurse, caring for babies doesn’t fly with dizziness.  Yuck…in spite of lesions that have lurked in my brain, I can think, still.

That’s my story.  I can’t even count the number of folks I have shared love and faith with because this gives one an audience!  Purpose….not what I planned for, but can’t argue with God (I’ve tried).

 

See other stories about Janet’s journey with ECD:

Story written in March 2016 by local newspaper – “If I die tomorrow, God is still in control.”

July 2016 story written by ECDGA staff – A Group No One Applies to Join