Rare Disease Day

An Anniversary

Posted on by wkennar
Room 7, shortly before I turned in my keys. March 1, 2013

Yesterday, February 28th, was Rare Disease Day.

Today, March 1st, is the start of Autoimmune Disease Awareness Month. It is also an anniversary for me. Ten years ago, March 1st, 2013, was my last day of teaching.

It’s a day with a lot of emotions for me, and the way I try to make sense of my emotions is by writing about them. 

Many of you, my dear readers, may not know that I am writing a memoir-in-essays about my experiences living with an invisible disability. One of my first essays is titled, “The Big Reveal,” and recounts the morning when my husband and I met with my rheumatologist. 

“The appointment was set for early morning so I could make it to my fourth grade classroom before the school bell. I took this as a good sign. No doctor would deliver heartbreaking news and then expect me to go teach a roomful of nine and ten-year olds. Whatever he had to tell me couldn’t be that bad.
“That’s what I kept telling myself because that’s what I needed to believe.”

When my rheumatologist finally put a name to my symptoms — Undifferentiated Connective Tissue Disease (UCTD) — my husband and I felt it was the first time we could truly exhale. 

My rheumatologist said something else that morning, something that didn’t quite register at the time. 

“It’s rare. No one will know what you’re talking about if you say you have UCTD. So, if you want to walk around and call it ‘The Kennar,’ you can.
“I chuckled. ‘I’ve always dared to be different, so I guess this fits.’
“But since then, I’ve changed my mind. I don’t want a rare condition most people have never heard of. If I’m destined to live with a chronic medical condition, then I’d prefer it to be familiar; a disease doctors understand and know how to treat. Maybe even a disease with its own awareness month or magnetic ribbon I can attach to my car. I didn’t know it at the time, but different, at least when it comes to the world of medicine, isn’t always better.”

You might not see it on any calendar, but Strong Woman Day? 

That’s every day.

Maybe Daring to Be Different Isn’t Always a Good Thing

Posted on by wkennar

Painting your hand is just one way to show support of Rare Disease Day

Saturday, February 29th is Rare Disease Day. “The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives.” 

I became ill in July 2010 but wasn’t diagnosed with Undifferentiated Connective Tissue Disease until November 2011. When my rheumatologist finally put a name to my symptoms, he told me UCTD is rare and that if I wanted to walk around and call it “the Kennar,” I could.  

At the time, I joked with my doctor, telling him I had always “dared to be different,” so why should this be any different.

But since that morning, I’ve changed my mind. 

I don’t want a rare condition most people have never heard of. I’d much rather live with a more common, even ordinary, chronic medical condition.

A disease doctors understand and can easily treat.  

Maybe even a disease with its own awareness month or magnetic ribbon I can attach to my car.