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I am Fighting Fabry Disease
Hi, my name is Hayley and I’m going to be blogging over the next few
months and I thought I’d share a little about myself. I’m 14-years-old and I have Fabry
disease. I have infusion treatments at
Emanuel Day Treatment Center every other week.
I bet you are wondering what Fabry is. Fabry affects the vessels in the
skin, kidneys, heart, brain and nervous system. You can visit www.fabry.org
if you want to know more on Fabry disease.
I have been getting infusions for a little over two years now. I will have to do them for the rest of my
life. We’ll, that is until they come out
with the medication in a pill form. My
grandma and dad have the same disease.
Both my older sister and younger sister have Fabry as well but at this
time they are not showing any symptoms.
Until they do they will not receive treatments.
I don’t let this disease control my life. I live like all other kids do. I love to read. I can go through one book at
week. Sometimes, if it’s so good I can’t put it down, maybe two a week. My mom
wishes she would have opened her own bookstore so I can get all the books I
want. My favorite book store is Barnes & Noble. I love to draw and I’m getting real good at
drawing anime on the computer. I like to
make my own anime stories on Microsoft PowerPoint. I’m going to high school next year and I’m on
the high school color guard team. I have lots of fun doing color guard. Dancing to the music and twirling the flags. I’m going to learn how to turn a rifle this
year. Right now we are practicing for
parade season. There are three local parades
I’ll be in with my group.
We’ll this is just a start of my blogging. I hope you will come back and
continue reading all about what’s going on in my life over the next few
months. Happy reading!
Read my blog
