Video
Transcription by
Denise R. Alberigi
Mother of Amanda
Dedicated parent to finding a cure
Highlights:
Emotional Consequences of RSD
Amanda
Alberigi
Amanda Alberigi:
I planned on going to college on a full gymnast
scholarship, and I lost that and it was hard. I
couldn't go to college and be the gymnast I wanted
to be or go to the Olympics.
I always wanted to be a flight attendant ever since
I was younger, but I can't!
Justin
Raulerson
Justin Raulerson:
I have played baseball for 10 years in a row. And
then I had broken my ankle and got this disease
and haven't played since.
Lacey
Booth
Lacey Booth:
I use to ride horseback and now my sister rides
horseback and I can't and I really want to. My mom
told me, "Next year", and then we figured
out I have Reflex Sympathetic Dystrophy and there
wasn't any next year.
Narrator:
Dr. Richard Hoffman, a clinical psychologist experienced
in treating the emotional needs of patients with
RSD, sat down with four young people with RSD and
encouraged them to talk about their experiences
with this disease.
Sarah Young:
You can't be a normal teenager.
Amanda Alberigi:
It's hard waking up every morning and going on with
your day and not being able to do the things you
really enjoyed before you had it and it's hard not
being able to participate in the things you would
like to participate in.
Justin Raulerson:
You can't really, like you can't do any of the stuff
you use to do. It's hard to get up in the mornings.
Dr.
Richard Hoffman discusses
RSD with Lacey
Lacey Booth:
I just...when my friends used to go outside and
play, at school, I couldn't go out, you know. All
I could do was sit there and watch them.
Sarah Young:
I went to therapy and it kind of made me feel like
I was kinda crazy but, I knew I wasn't, but I was
like really suicidal. (Sarah was crying at this
time.)
Narrator:
Their comments were unscripted and the video was
presented without editing to allow the viewer to
appreciate the honest and natural discussion as
it occurred.
Dr. Hoffman separately talked with the mothers of
the four patients and once again this discussion
is presented uncut and unedited.
Renee
Raulerson
Mrs. Raulerson:
And the school system is bad. They don't understand
so, yet you have a hard time because the children
miss a lot of school.
Dr. Hoffman:
The school system doesn't want to accommodate to
the special needs of the kid.
Mrs. Raulerson:
No, no.
Patti
Booth
Patti Booth:
It is very hard because like right now Lacey is
doing real well, and so it's hard for me to sit
here and listen to everybody else talk about the
fact that it does come and go and that's scary,
that's real scary. You know, I keep telling Lacey
I wish I could put a band-aid on it and kiss it
and I can't do that.
Mrs. Alberigi:
You feel helpless.
Narrator:
Both of these discussions provide an insight into
the emotional and psychological impact of a disease
like RSD on both patients and caregivers alike.
Our purpose in presenting these discussions is to
allow health care professionals and others an opportunity
to glimpse the emotional side of RSD, providing
an important supplement to the critically important
but necessarily impersonal clinical information.
UPDATE
September 2007
Nearly three years later, Sarah Young gave birth to two lovely children
If you wish to purchase an extended version of this
program that is two hours long on DVD or VHS video
tape please contact the International Research Foundation
for RSD / CRPS at its website www.rsdfoundation.org
or call the Foundation's headquarters in the United
States at 1-813-907-2312. The price for either the
DVD or VHS video tape is $49.95. All proceeds go
to the RSD Research Fund.