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Rare Disease Day

Today, February 28th, is Rare Disease Day.  

This is the definition of a rare disease by RareDiseaseDay.org: A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.  A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

The most difficult part of a rare disease is that many sufferers look and act completely normal.  They suffer alone in silence often with those who don’t understand what they are suffering from.

rare diseae day ali

As many of my readers know, I wrote Breaking the Cycle to bring awareness to Cyclic Vomiting Syndrome.  My daughter, Ali, has CVS (learn about CVS here).  Her symptoms started at one-year-old.  She was diagnosed at two.  She didn’t get the meds to treat it until she was two and a half.  She is eleven now and still suffers from it.  Yet she is a smart, sassy, beautiful girl who plays basketball and volleyball, likes to program robots for First Lego League, likes to read Bad Kitty books and is the right mixture of girly girl and tomboy.  And she is the strongest person I know.

And today she is on CNN for her CVS.
http://www.cnn.com/2014/02/28/health/rare-disease-day-irpt/index.html

Now, what I don’t tell anyone is this…

rare diseae day mom

I was diagnosed with Intracranial Hypertension in 2000 thanks to a flushed contact lens (learn about IH here).  At the time I had horrific migraines.  I didn’t know they meant I had IH.  I’ve struggled with the disease for going on fourteen years.  I’ve never had a surgery to get it under control.  I’ve done everything I can to keep it under control myself.

If I’ve tried to teach my daughter anything it’s that she is stronger than her disease.  Her disease doesn’t define her.  She can live her life despite it.  And I am proud to say she does very well to live her life to the fullest.

So Happy Rare Disease Day.  To celebrate, give someone an extra hug today.  I will be doing the same thing.

 

 

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About triciaandersen

I am the author and illustrator of the children's book "The Peculiar Princess". I am also the author of two adult fantasy romance novels, "The Sorceress of Savon" and "The Woodcutter King of Muladin". Along with being an author I am married to a wonderful guy and have three beautiful children. I coach youth track and field, sew and chase my children around to their various activities.

Posted on February 28, 2014, in author, books, fiction, novel, romance, story, Uncategorized, writing and tagged , , , , , . Bookmark the permalink. Leave a comment.

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