In the Face of Histiocytosis...

This is the face of Langerhans cell histiocytosis.  It's warped and skewed, a permanent sneer formed from thick scar tissue in the cheek bowing the nose, drooping the eye, curling the lip.  It's bound to stay this way.

There will be no fixing it, just like there's no fix for histiocytosis - only one treatment protocol after another 'til remission is hopefully reached,  heavy make up to deal with the aftermath.

Whaaaa???  What is she talking about??  Mayree -- you done gone somewhere beyond your usual self.  Well.  Not really, folks.  I'm not defined by a disease but it has certainly set parameters and helped to define my life.  It's Langerhans cell histiocytosis, formerly called histiocytosis x and also known as eosinophilic granuloma.  It's an orphan disease affecting approximately one in 200,000 births.  It's a "Side of Life"  I've a unique perspective on.

Parents of infants born with any of the five (or so) histio diseases are horrified at the lack of standard treatment available.  Children develop it without warning, the diagnosis often taking weeks and months, local disease databases being just that limited.  Adults, like myself, that develop it later in life are tasked with becoming our own best advocate;  the blurbs in standard medical textbooks insufficiently lacking with respect as to how to answer any of ten thousand questions patients and parents constantly have.

We're classified as having an orphan disease.  That means there are too few of us that die from it to warrant research by the government, not a pleasant thought when the government takes better notice and care of others.  I pay my taxes.  I vote.  I have an orphan disease and am insignificant to the country my niece's husband is defending at this very moment.  Go figure...

Annnnyways.  September is Histiocytosis Awareness Month.  It's not a pretty disease.

I can attest to that....

Here's a link for you.  It's where I found Dr. Ken McLain, pediatric hematologist oncologist/histio researcher with Baylor/Texas Children's Clinic in Houston.  I've not been able to get back to see him in the last seven years, life interfering with the best laid plans of mice and men, but I thank him whole-heartedly for his untiring research and treating scared (and scarred) adults like myself, allowing a sense of normalcy to return from the upheaval of dealing with this disease:

https://histio.org/document.doc?id=106

Please.  Don't EVER take my word for anything.  Find out for yourself.  Be histio aware.  Google it:  Langerhans cell histiocytosis.

And not ONE word about all the canine references, okay?  That's not funny at allllllll.......