[misc.handicap] Juvenile Dermatomyositis

Patty.Cain@f940.n139.z1.fidonet.org (Patty Cain) (06/25/91)

Index Number: 16427

[This is from the Rare Disorders Conference]

Hello,
     My name is Patty Cain and I live in Escanaba, MI.  Our daughter Shannon,
who just turned 5, has a rare condition known as Juvenile Dermatomyositis.  It
is an autoimmune/muscle disease with some similarities to lupus.  Shannon was
hospitalized for over 4 months at the U.W. Hospital in Madison, WI.  She took
massive doses of oral and I.V. prednisone along with many other drugs.  The
steroids caused her to lose calcium and resulted in several crushed vertebra.
She was in a plastic body brace, confined to a bed, taking morphine for the
pain several times a day.  When we came home in December, she was wheel-chair
bound and had to learn to walk all over again.  Today, through the grace of
God and some WONDERFUL doctors, Shannon is walking and running and playing
again like a normal child.  They believe she is in remission and we pray it
stays that way, although with this disease, there is always the chance for
relapses and complications.

     My husband and I, along with our 7-year old daughter, went through the
worst pain and anguish any family can.  We came very close to losing Shannon.
We thank God every day that she is still with us.  She suffered more pain than
any human being should have to, and bore it with a dignity and sweet spirit
that only a child can muster!  I stayed with Shannon (slept on the floor in
her room) the entire time she was hospitalized, and met many, many parents who
were in the same type of situation, albeit with a different disease or
condition.  We forged a bond between us that only people who've been there can
understand.  Kind of like going through a war together.  I would be very
pleased to hear from anyone out there who has gone through a similar situation
or has Dermatomyositis.  My best to you all!!!!

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