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It’s an exciting time for those
of us who have been working towards educating the public, Governments and
medical communities about ARD (Adhesions Related Disorder) and how it
affects US the victims on a day-to-day basis.
Through the hard work of our American much loved Coordinator of
Bombobeach.com The American Adhesions Support Group Inc. Anthea Nesbitt,
we now have an official permanent day designated each year to celebrate,
educate and reach out to those around us with information about ARD!
YES! We now have our own “ARD Awareness Day” which will
fall on the fourth Thursday of every September and this year falls on
September the 25th 2004!
So it’s time to pull out all the stops,
set aside excuses, worries and nerves about “talking publicly” about
YOUR illness and join us around the world as we celebrate “National ARD
Awareness Day”, essentially making it really a very INTERNATIONAL day
for reaching out to others.
We are going to make it as easy as 1 – 2 – 3 and all YOU have to do is
print out the form letters we have provided to you, the information
brochure on ARD as well as a set of ideas and ways YOU can get out in your
community and spread the word about ARD!
Now is your opportunity to do something to help you feel better about
being ill, that sounds weird? Well,
I have asked several of our beach buddies that have been working in
advocacy themselves what they get out of helping ……
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Shawna French:
I feel as ARD has greatly compromised by
quality of life and I no longer can enjoy physical activity of any
sort. It affects every aspect of my life, physicla, emotional,
financial .. this illness is devastating. Until you walk a day
in my pain .. do not ever judge who I am ..... Now
.. for helping ... being that this illness takes so much of you it
makes me feel I have self worth again to be able to educate others
through my own experiences and every time I help one soul, I feel we
are closer to winning the ARD battle. Education
and being a great advocate for oneself is vital to awareness in this
campaign. Shawna
Karla
Adhesion Related disease has brought me
down to the point that each day is spent wondering if this will be my
last. It isn't a matter of finding an end to the pain. It's a matter
of just when it's going to take my life.
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Other Choices for you
to
participate in:
All print friendly and available for you to
use quickly !
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Nicole:
I have lived with my mom's
suffering my entire life. I ended up having to raise myself
because my mom was in the hospital so much. ARD walked into my
life and stole my precious family life away from me when I needed it
most. Now, I sit waiting to see when it will rob me of the one
person who means the most to me, my mom.
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Nancy Hale (Shai):
To me it has meant a lot of
frustration. I arranged an interview with a local paper, which
ended up being a pity piece instead of the informative article about
this disease that I wanted to see. I have contacted the
provincial and federal politicians for this area, and had no response
from either of them.
I hope that I have helped people coming to Bombo, looking for
information about dealing with this disease, both with the links that
I have posted and with the support I've tried to give in responses to
messages, in the chat room, on MSN, and via e-mail. I hope that
I have educated a few people locally by speaking up about why I use a
cane and why I can't do the things that I would like to do. And
I hope I have clued a few people in to the fact that just because I
don't look or sound sick, that doesn't mean that I'm going to dance
the fandango in the town square tomorrow
It's good to know that there are other people out there dealing with
the same limitations, the same problems, but it hurts to know that we
have to do this - that we must suffer the way we do because no one
knows what to do to help us. That we must help ourselves and
others by researching and experimenting and exploring. That
other countries have better treatments available while here in Canada
we are still fighting to have adhesions recognized as something that
can cause problems.
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Anthea Nesbitt:
I have suffered with ARD
for 8 years now....I live in Ohio, U.S.A .....and I am the Coordinator
of The American Adhesion Support Group. A year ago, we started the
Spirit of Awareness Campaign...this has been an ongoing effort all
over this country, and internationally to get our voices heard for
those suffering from this insidious disease. On a daily basis I
work with my fellow sufferers to encourage them to tell their stories,
or help to contact newspapers in their area, and even their state
officials to pass resolutions addressing ARD. I have found this
advocacy to be not only tremendously rewarding, but also a wonderful therapeutic
coping skill. Focusing on others, hearing their own individual
plights, just strengthens my mission for this "cause". I am
then able to compartmentalize my own pain. Advocating for all
who suffer with ARD has been the most rewarding experience of my life
!! I look at having this disease with a new sense .....it has brought
me wonderful, once in a life time, friendships....blessings from all
corners of the world!! For all the pain, ARD has brought into my
life....it has given me STRENGTH to fight....taken me to
"places" I would have never gone......it has made me think
of what is really important in my life....I find great comfort in
helping others and offering support. Comfy Hugs to all, and
thanks ........Anthea
As for myself, I have received so much in return for the work and time I
have given to the website and support group by not only meeting an
incredible group of people I feel as though I have made so many TRUE
friends for life and while I have days where I am not feeling
“fantastic” I still have a smile on my face and I can hold my head
high because I have done at least one small thing each day towards
spreading the word about ARD.
It CAN be as simple as handing out a brochure to
someone who asks you what is wrong with you to asking your local GP if you
can leave brochures in the waiting room for his other patients to read.
If you feel comfortable, contact Anthea and ask her to help you
arrange to do a newspaper article in your local paper, but just keep
looking through the information we have here in this special section of
the beach and perhaps one of the ideas we have listed will appeal to you
and be a way YOU can make a difference on ARD Awareness Day.
Love & warm gentle hugs to
all,
Jo
Eslick
Founder
www.bombobeach.com
& www.adhesions.org.au
The Australian Adhesions Support Group Inc
The American Adhesions Support Group Inc
joanne@bombobeach.com OR admin@bombobeach
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