"My
name is Keith Orsini. I, with my family, run the American RSDHope Group,
the Sponsor of the RSDHope Kids Site. I have had RSD since I was 14 years old,
back in 1974. I am now 42. My RSD is Full Body or "Systemic".
Understand it only spreads full body in 8% of patients.
I
had a very bad auto accident in 1985 when I broke my back and tore up my
shoulder. The subsequent back surgery resulted in Failed Back Syndrome as the
fusion failed (they had to vacuum out one of my vertebrae as it was so badly
broken). This triggered the RSD to go full body in quick order.
In
1995 my parents and I started the RSDHope Group. Over the years, with help from
many volunteers (like Chrystine, Betsy, Amanda, Suzie, and others), we have
added many programs. Almost from the beginning we got together with Betsy and
started the RSDHope Teen Corner. She is now a freshman in college!
It
was very important to me to set up the Corner. I did not want teens and young
adults going through what I did, alone. Sure, like you I had friends and family
but as you know, it is extremely difficult for anyone but an RSDer to truly
understand what it is we deal with every day.
Eventually
we hooked up with Carrie, Jen, Kyla, and Lisa and they set up the RSDHope
College Quad, for college age RSD patients. Again, something I would really
loved to have been able to be a part of when I went through college. Then, not
too long ago Chrystine started up, with the help of other young ladies, the
RSDHope Kids site, for those 12 and under. With the help of some of my friends
we just finished this new website for RSDHope Kids!
I
know this is long but I wanted all of you to understand where I have been and
mainly why these three groups are so important to me. I think of all the kids
and young adults in these groups as my little brothers and sisters. I am so
proud of those who run these groups. It takes more than you think to do so.
Many
in these groups, I have known for years and they call me big bro. Feel free to
do so :) I am so
pleased for our group to be able to sponsor and help you and others. And I
wanted you to know that even if your RSD isn't reversed, life goes on. It can be
tough at times but you can and should do whatever it takes to finish school and
then college; despite the RSDS. So many adults feel their life is over when they
get the diagnosis, I never want any of you to feel that.
I
am living proof, as are many many others, who have had RSD for decades;
that life goes on. You can still be active. You can still DO things. Maybe not
what you did before but new and different things.
Our
group, the American RSDHope Group, is now world-wide in it's reach. We average
12,000 to 14,000 visitors weekly to our website! We started out with 150 weekly
back in 1997. To date we have reached almost 2.5 Million people through the
website. We have sent out hundreds of thousands of pages of information. We hold
National Conferences in Portland, ME and mini Seminars in different states as
well. The people who belong to our group have been on everything from 20/20 to
lots of TV interviews, newspapers, even speaking in front of smaller groups of
every type.
I
do not say this to brag. I say this to show you that YOU can make a
difference. Talk to your class about RSD. We can help you with information and
hand-outs. Talk to your local newspaper. Maybe hold a carwash with your class or
scouts, etc., for donations to help us reach even more people. Whatever you do,
my little brothers and sisters, DO something. Do not let RSD grab hold of you.
Grab it by the tail and shake the little monster, hee hee.
I
will finish here by letting you know, you can always count on my parents and I
to be here for you and your parents. They can call and/or write us too.
The
Groups phone number is 207-583-4589, our website is www.RSDHope.org
(place it in your favorites so you won't forget), and our email is simply
rsdhope@mail.org
My
parents names are Bob & Lynne if your parents would like to call and talk.
I
hope you like this new website that Amanda, Sue, Chrystine, and myself put
together for you. This is a great group and I hope you get involved in it!
Big
bro, Keith
