Juvenile Dermatomyositis (JDMS) is a rare childhood auto-immune
disease. My daughter, Julia, was diagnosed with JDMS in March
This web site is here for two primary reasons. First, to chronicle
the events surrounding Julia's diagnosis and treatment of Juvenile
Dermatomyositis, thereby helping me cope with it. Second, to give
other children and their parents in the same situation some much-needed
information and support. Juvenile Dermatomyositis is a very rare
disease; I have scoured the internet, bookstores, and libraries
and there is precious little on JDMS to be found, and much of
that is out of date. I hope that this site will be valuable to
you as you learn to cope with it. I'm not a medical professional,
so nothing you find here should be considered medical advice.
If you have any questions, please start by visiting the Frequently
Asked Questions. If you have feedback or comments, my email
. Julia would love to hear from you if you have any words of support
or advice; her web page is at ralphb.net/juliafb,
and her email address is
. There's also a feedback form you
can use if you prefer.
If you're looking for information and support, I highly recommend
you join The
CureJM Foundation. There is no finer or more dedicated
organization working to find a cure for Juvenile Dermatomyositis.
You can begin reading Julia's Juvenile Dermatomyositis Diary
from the beginning now by clicking on this arrow, or use the calendar
on the left to jump to the date you want.
Update: Read about Julia's take on her early
days with JDMS! She wrote an essay for 9th grade english, which
her teacher submitted to a teen writing magazine, Teen
Ink. They published her essay in their March, 2006 issue!
Read My Journey by Julia by clicking here.