Lauren's story

Lauren's 17th birthday
Here I am, sweet 17, wearing a birthday present from the local fire department

One in a million

Hi everybody, thank you for visiting my page! My name is Lauren and I am 17 years old. I live in Kansas City and I have been here my whole life. I live at home with my Mom, my Dad, and my little sister Morgan, who is 14. Morgan is a great sister, I say she is my "little" sister, but I should probably say "younger" sister, since she is six feet tall (four inches taller than me)! I also have a dog named Chopper. She is a golden retriever and is SUCH a sweet dog! She loves getting attention from people!

I am in 11th grade in school and my favorite subjects are writing, literature and history. I'd have to say that writing is the absolute best!  I have a lot of hobbies too. like using the computer and chatting with friends, watching movies (especially those with George Clooney), reading books, writng poetry, playing video games, and listening to music!  I love sports too, but I can't play them anymore because of my illness.

When I was 13-years-old, I got really sick. It started with SEVERE stomach pain and a few other unpleasant symptoms. The doctors tried for quite a while to figure out what was going on. Finally, they discovered I have a rare neurological, metabolic problem called porphyria. Porphyria is a disorder in which too much of a chemical called porphyrin is produced. We all have some of this chemical, since our bodies need it to make heme, the part of blood that gives it its color. Heme also carries oxygen to all of our cells. The problem with my having too much porphyrin is that my body senses the excess, so gets rid of all of it too quickly, and as a result, not enough heme sticks around to keep me healthy. I get acute attacks when the levels of porphyrin get too high, and then I am REALLY sick and my pain gets A LOT worse. 

See, porphyria attacks the nerves in my body. I'm unable to walk anymore, and I can't use my left arm. I'm pretty much stuck in bed most of the time, which as you can probably guess isn't much fun! Because of my illness, I have something called a port-a-cath, a small tube inserted in my chest so that I don't have to get stuck all the time to get medicine. It doesn't hurt, really, and since I need the medicine (called hematon) once a month for five days, I'm happy that I have an easy way for it to go from the outside of me to the inside of me. The medicine makes me feel pretty awful, but it helps the disease, so I guess it's worth it! 

I also have something called a jejunal-gastric (j-g) tube. That's a mouthful, huh?  Anyway, I can't eat by mouth like other people do, so I am fed through my j-g tube which goes into my stomach. Wierd, huh? As you can probably tell, I've become an expert on this disease and all of the problems that it brings with it.

I think I'm a pretty easy going, friendly person, so I pretty much get along with anyone.  However, there are a few things that drive me crazy. such as when a healthy kid comes over to my house and starts complaining about the silliest things, like "oh, I hate my life, my soccer coach didn't let me play in the whole game!" or "oh, I just wanna' die! My hair looks sooooo awful!" I guess what I mean is, I hate when people don't realize how lucky they are, and when
they don't appreciate how awesome their lives really are. Sometimes I feel like saying, "You know, if you think your life is hard, then you should come and spend a day at my hospital with me and all the other patients there. That would really make you appreciate what you have." I would love to share this bit of Lauren advice with the whole world:

Appreciate life, appreciate your health, and appreciate the people around you who love you. You just don't know what you have 'til it's gone! 
Because of my illness, I am homeschooled. I am taught by some really nice teachers from the local high school. They come twice a week, and I really enjoy my time with them a lot! I know it sounds kind of nuts, but I actually like gives me something to do during the day when I feel up to it! I think the best thing about being homeschooled is that you can concentrate really well because there aren't any distractions, and you can ask questions any time you want because it's just you and the teacher. I think the worst thing about it is I really miss my friends a lot, and it can be pretty lonely being in a class all by yourself!  It's pretty hard to pass notes when you're homeschooled because the only person you can pass a note to is yourself!

One last piece of I think most important:

Please treat kids with an illness or disability the same way you would anyone else, because inside we are just like everyone else! We may have physical problems and look a little different on the outside, but what matters is what's inside. 
Thanks for visiting my page...I hope you enjoyed it!
My poems

Want to know more about porphyria?

To the frog ponds
To write to Lauren 
To the site map

Joan Fleitas, Ed.D., R.N.
Associate Professor Of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: June 12, 2007