My name
is Rhonda
I'm a
38 yr old women living with NF 1, I inherited NF through my mother and I have
one other sibling who also has NF.
Neurofibromatosis
was a name I had never heard or understood until I was approximately 14 yrs
old. It was at this age I started to notice tumors appearing on my body. At
the time I didn't know what my mother had or that I could inherit her condition.
It wasn't long after this I was diagnosed with neurofibromatosis at Toronto
Sick Kids Hospital. I'll never forget that day, coming home on the train wondering
how this was going to change my life and what I could expect in the future.
Fear was one of many emotions I felt at this time. I had witnessed all through
my life how strangers treated my mother and I didn't want to face that or
accept that it could happen to me. So, for many years I was in denial, I didn't
want to think about it or allow it to be real in my life. At this time this
was easily done as I was not badly affected. I went on with my teenage years
and tried to feel normal and knew it was only a matter of time before it would
manifest into something that could be seen by all.
There
came a time in my 20"s that I wanted to understand NF more and be informed
of the various aspects of this condition. I was beginning to realize that
I could not continue to live in denial, and that the time had come for me
to accept the condition and find positive ways to cope. This did not come
easily and I still had a long way to go.
Over the
years, from that point on. I gathered as much information as I could from
New York, as there was nothing in Ontario at the time. Once the NFSO was formed
it was a huge comfort to realize I was not alone. To go to the meetings and
talk with others who had NF was one way of coping.
My mother,
at this time began to reach out to the community to raise public awareness
about NF. She was a huge inspiration in my life, her courage and strength
gave me hope that I too, could deal with this condition. I no longer was in
denial. but I still found it hard to cope. I met my husband in 1987 and this
was the first time I realized that for those who choose to look within, I
could be loved and accepted, and this gave me comfort. I began to realize
that for all those strangers who were not accepting, there would be many who
would be able to look past appearances and see the person within.
At this
time I decided I would have to accept the fact that not everyone would be
kind or take the time to get to know the person within, but I would treasure
those who did. God gave me the gift to work with special needs children and
they have taught me many life lessons. They have so much love to give and
they give it unconditionally. I knew that my condition was not near what they
would have to cope with in their lives. I realized I had to do something positive
with my life and be grateful for the blessings that I had been given.
I'm now
38 yrs old and have noticed a great deal of progression with my tumors. This
is the turning point for me, now it is really here. People have begun to stare
at me and when I look in the mirror I no longer see the person I did years
ago. This was depressing and I knew I had to do something, as I was determined
not to allow my condition to rob me of the blessings in my life. or stop me
from living. I decided to start a support group in the city I live in, to
offer a place for those whose lives are impacted by NF to find comfort, a
place to talk, and find support. This along with the NFSO keeps me strong
and gives me hope.
Most days
are great, however, some days I still feel down but I think this is normal.
I have NF and that is just on aspect of my life. I'm also a wife, step-mother,
step-grandmother, daughter, sister, friend, and coworker, most of all a human
being with a spirit who is choosing to enjoy all those people who can see
what God sees, and that is my heart, not my outward appearance. My husbands
love and encouragement allows me to pick myself up when I am down and I know
that I can go through another day.
There
will be a cure, and in the meantime I have choose to live life to the fullest.
God Bless
you all !! Rhonda
