Rare Disease Day!

Wing-it Wednesday!


Today is a very special day.  As you can see from the title of my post, today is Rare Disease Day!  It is a day where we recognize and focus on those men, women and children with diseases or health issues that the  world has no idea about.

This day is near and dear to my heart.  It is honestly hard--especially when little children who get teased or made fun of because no one really understands what's wrong.  But we are going to fix that because today is National Rare Disease Day, and we are going to make people aware of those health issues that are unknown to the general population.

So, I am going to get a little personal with you.  I hope that's ok.  I would like to share something with you about me.  I also have a rare disease that most people have never heard of.

I am a vampire.

No, seriously.  Let me explain.

When I was about 4 years old I went on a trip to Lake Powell with my family.  Which is a huge lake that is in southern Utah.  Anyway, we went camping, boating, and had lots of fun.  And I was having a ball (for the first day).

I was playing in the sun and sand and my arms, hands and face started to get all tingly, and they began to burn like they were on fire.  Nothing could help them cool down.  Then the itching started.  It wasn't like an itch you need to scratch when you get a mosquito bite.  It was a deep itch, under my skin.  And when I would itch it would hurt.  My hands and face started to swell a little while later and I got this purple-ish rash on my hands.  And the pain lasted for about 3 days before it went away.

We found out later that I have a rare metabolic disorder called Erythropoietic Protoporphyria.  EPP for short.  I am missing the last enzyme that helps my body break down the UV rays from the sun.  The UV rays just build up and build up in my body.  So if I am out in the sun for longer than about 15 minutes or so, then I start to get all of these symptoms I spoke about. The only way to get it to go away is to stay in doors until it subsides.  It will usually take 24 hours to about 3 days for it to go away.  EPP doesn't usually show up until you are about 3 or 4 years of age.  There is no cure for this disease.  But it preventable and for that, I am blessed.

I don't go out in the sun very often.  If I do, I am usually all covered from head to toe.  It does make it hard for me to be able to go swimming with my kids or take them to the park or even go on a long walk.  But we manage.  I like to joke around all the time that I am a vampire because it makes it a little less, shall I say, "weird."   Because in this day in age, vampires are cool!  It is actually been said, that is were vampires came from.  People with severe cases of this disease who could not go out in the sunlight.  There are only about 350 cases of EPP in entire world.

For the next week I will be donating 15% of my sales to The American Porphyria Foundation in honor of Rare Disease Day, so that the research can continue and we can hopefully one day find a cure for this rare disease.

Today, please honor all of those wonderful people in your lives that have to live with these things.  It's hard enough as it is to live with it, day to day.  Let them know you care by supporting Rare Disease Day!

Please share your stories and let me know if you or loved has a rare disease!  I would love to support them in any way that I can!  



 I love this one!  My hubby says I look like a ninja.  :)


 In my nice wide brimmed hat and long sleeves and gloves.  I am also wearing long pants and tennis shoes.



I thought I would never do this, but I actually ran a half marathon last September.  In my sleeves, gloves and scarf to cover my whole face.  Whoohoo! :)

Happy National Rare Disease Day!
Aly