| MY STORY - Maria Jutasi
On May 13th, I went through my 8th surgery.
This time, I had the support of my doctor, who I
have been seeing since November 2000 and I
wouldn’t have been able to do it without her. Up
until 2000, I thought I was dealing with NF. Little
did I know that I was in denial about the impact
that NF had on my life, physically, emotionally
and psychologically. For the first time in my life I
slowly started to trust my doctor and talk about my
feelings. About my fears, my anxieties and my
worries that I had kept bottled up inside me.
Without her I would still be in the closet about so
much. The shame and ridicule that so many of us
still associate with NF. That is the reason that this
disorder remains so hidden, despite it prevalence
over cystic fibrosis and muscular dystrophy, is
because it can be so disfiguring.
I cannot say enough about my doctor who I’ll refer
to as “K”. My life has been so different since she
has come into my life! Her encouragement and
support has been unconditional. I’ve felt free to
open up about NF and not feel ashamed about the
tumours and scars that have covered my body. My
most recent surgery would not have been possible
without K. She has made many sacrifices so she
could be with me pre-operatively. She knew this
10 years ago, I had suffered post-traumatic stress
disorder (PTSD) from very difficult intubations.
These intubations were made all the more difficult
because of my upper airway obstruction from NF.
That incident made this surgery an extremely
frightening one. K prepared me for this surgery in
many different ways. The one that will stay with
me forever is her physical presence. This memory
will stay with me as long as I live. I wish she could
be recognized in a greater way because she really
deserves it, although she would beg to differ.
I consider myself very lucky to have found such a
gifted therapist! If anyone is having difficulties
dealing with NF, they should consider therapy as
an option, it may be the wisest decision you have
ever made. I didn’t believe I had a problem with
NF, but as I look back over my life now I know I
did, I’m now 40.
Mary-Jane, if you think my personal story will help
anyone or if you wish to print it in your next
newsletter, you have my permission.
By the way, my surgery was on the right side of my
tongue. The tumour was making it bulky and
difficult to breathe, so the tongue had to be
debulked. The relationship I have with my therapist
is very close and I consider myself very lucky in that
way too. I’ve been seeing her for 4 years.
Hope you are keeping well,
Maria
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| NF FAMILY CAMP
The gang at NF Alberta is seriously
considering an NF Family Camp in
Alberta this summer. If you and your
family are interested in attending; they
would like to know numbers so they can
find a location. If there is a good response
they will get the ball rolling. Please contact
Pam Innes, NF Alberta or our office. A
great summer vacation with your family!
10
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| A SPECIAL THANK YOU
We would like to say a special thank you to
Gabi von Gans for taking all the photos
featured in this issue. Thanks for capturing all
these great moments at our symposium.
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| Your 20th Anniversary & Medical Symposium
'Neurofibromatosis-Through the Medical Maze'
brought individuals from British Columbia,
Alberta, Quebec, Ontario and Nova Scotia, Canada.
Presenters and participants from Michigan, Indiana,
Ohio, Maine, Texas, California and New York,
U. S. A. We had over 180 people in attendance with 135
people attending the NF1 workshop, 25 attending
the NF2 workshop, 20 attend the Teen Workshop,
120 people attended the Banquet dinner and dance.
There were also, 15 children in the Child Care
weekend. The welcome and hospitality suites were
a huge success as was the silent auction and raffles.
Written transcripts will be available soon, watch
further newsletters! Thank you everyone!
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EVERYTHING’S COMING UP DAISIES FOR THE NFSO
Professional photographer Gabi von Gans presented us with two ‘daisy’ prints at our 20th Anniversary
Banquet; they are limited edition prints and available for a limited time only. The cost is $45.00 each with
a portion of the proceeds donated to the Society. They are breathtaking, one in colour, one in black and
white and only available from us or Gabi directly. What a lovely gift while supporting our Society.
Please order from: Gabi von Gans, P. O. Box 204, Baldwin, Ontario L0E 1A0
Telephone (905)722-0189 gabivongans@hotmail.com
Also available by contacting our office at: NFSO 180 Circle Lake Road, North Bay, Ontario P0A 1Y0
Or, toll free 1-866-THE-NFSO (843-6376) |
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