2005 Report
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ARD AWARENESS
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What
an exciting week, "ARD Awareness Day 2005 " was full of all sorts of
stories big and small....like Jo, I have heard from many people who
helped in their own way to spread awareness. Many submitted letters
to the editor; contacted reporters and may still be working on
getting an article written in their local papers; my friend Marilyn
had written to tons of people advocating for both of our legislative
issues posted here, to have them submit letters to their
Congressional officials (another Ohio Congressman just co-signed
onto The Pain Care Policy Act H.R.1020 yesterday); Kathy has some
good news too, but I will let her share that with
everyone.....personally I have been busy too. I passed out so many
brochures I lost count...wearing our PIN certainly brings attention
and can be a great lead-in to start up conversation.
Besides being on the phone more than usual this week with ARD
sufferers, some new ones too, on Thursday (our actual "Awareness
Day" some of my co-workers and I went out for a bite to eat after
work. We had a toast for HOPE and also blew bubbles (we had little
bubble containers for ARD Day given to those attending our
"Gathering" here in July) that I shared with my co-workers. So, we
blew bubbles right there at our table for "HOPE, RESEARCH and the
Strength to FIGHT" for all those suffering from ARD world
wide....well, not only did this attract a lot of attention but more
brochures got handed out too.....!!!! The waitress was real happy
she had our table.... !!
I
was also contacted by the head nurse of a surgical floor at one of
our major hospitals to give an in-service to all of the nursing
staff about ARD and the unique needs of ARD patients, so that the
staff can better serve them and understand this disease. This is an
awesome opportunity to ensure a better quality hospital stay for ARD
patients. It is such an important area of focus for continuity of
care and to meet the patients’ needs. Educating the medical
community is foremost in our campaign for Awareness. I will be doing
this in 2 weeks, at 7am, to catch both the day and night shift (lots
of coffee that day.)
Congratulations to everyone who helped this year on another
successful "ARD Awareness Day 2005".....please feel free to post
something, share whatever you did, no matter if you talked to just
one person...it is all about sharing information, if it was one
person or 20, it doesn't matter. One hand or voice reaching out to
another, touching that one lonely, confused person, might make a
HUGE difference in a persons life. Thank you everyone for your
efforts.... ...Big Comfy Hugs... Anthea
My ARD Day
Since I have a job and have to work all day. I bought coffee cake,
cookies, I am wearing my pin, I have printed my brochures, I have my
office decorated with posters etc. Those individuals that remember
last year have commented already that they remember. And have even
shared some stories about people they have met along the year
suffering etc. I now even have a co-worker who's mother lost part of
her colon due to adhesions and was quite shocked when she found out
I was a sufferer.
HAPPY AWARENESS DAY BUDDIES...... I LOVES YA ALL BERRY BERRY BERRY
MUCH.
BIG BIG HUGS.... SUE
Beach Angels....My Adhesions Awareness Day was GREAT!! I set up a
Table up at our Local Mall...I was there for a few hours in the
am...then back in the evening (had a Drs appt..) The Mall gave me a
Good Size Table...and a good spot in the Mall near the most highly
used entrance.......Also, had my oldest make me a sign (he has the
artistic hand here) It wasn't as big as I wanted (but I didn't tell
him that) but it attracted a fair amount of people... I got
Balloons...with the letters ARD on them...tied them to the chair...
so people could see them and be curious and come over that
direction...That was another good way to start a conversation...I
had a handful of people ask me was I there for American Red Cross
Donations...I said that No that would be ARCD...you should have seen
the looks on some folks faces…DUH!!...was the look. Anyhow…it opened
the door for me to say No...ARD stands for Adhesions Related
Disorder…proceeded to talk to those that were interested....some
folks walked away a bit more educated...and anxious to check out the
website...and others listened but weren't interested which was fine
too...I am glad that at least they listened...only a handful or so
didn't want to be bothered at all which is to be expected I didn't
have to approach anyone...each and every person that I spoke to came
up to the table...started looking at some of the literature...and we
started conversation....a few exchanged stories...(not to many)
Talked to a few...that were aware of ard due to someone they
knew...and they took info for that person…There was a couple women I
talked to for the longest time...one of them offered her cell
number...and the other ladies...said she would like to email me
after she visits the site...as she may have some questions...and she
said she can only visit internet from work...but she may not be able
to post...any questions on the board...I told her I would be happy
to answer any questions if I could...if I couldn't I certainly could
refer her to Anthea...some said they would rather just talk to
someone rather than email someone etc...I told them...that could be
arranged, and that I would prefer they email...their numbers if/when
they decided they wanted further information or support.
I also put a small bowl of candies (like nerds sweet tarts etc) so I
could attract women with kids... even tho women aren't the only ones
to suffer ARD...and I told them...that...it can affect anyone...men,
children and you can get them in lots of different places as
well...just seems that the majority of sufferers...are female.
Any how, Beach Angels...it was a very successful day...I was so
energized and felt so good mentally. I wish I could say the same for
Physical...But... It was Every Bit Worth It..
I had a Great Time being out there talking to people...I love to
talk...and help people, so it wasn't hard at all...Bombobeach
Attire, Pin, Brochures, literature from board etc...all the tools we
need...to strike up a conversation is available to us…if ya can't
find something just ask...Someone can help...for sure...
I look forward to reading some of the other Angels Stories...So
please...please...share your Awareness Day with the rest of us..
Almost forgot to tell you all this...JO...had emailed me a few days
before Awareness Day...and was telling me this idea she had for a
visual of adhesions...So she got me thinking about things like
that...and a good way to show folks what adhesions can look like...I
was able to give them a very good visual...I took two items...that I
could...spread a bit of glue on it...and let it start to dry a
bit…Then pull the two apart...explained to them...that is a lot what
filmy adhesions...look like....They seemed to like the visual...some
seemed to understand a bit better after that...so JO Thank You...for
getting my brain jumpstarted and coming up with some thing that
worked pretty well for me...I love your idea too...just didn't have
enough time to get it together…But I am going to try it. I can't
believe almost forgot to share that with all of you...
Love to You All...
Leigh
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Hi everyone,
Just wanted to let you know that I have been working on ARD
awareness day from my office, trying to come up with a few different
ways that everyone can contribute this year without leaving home!
Of-course I know that some of you have already planned exciting
things for the day... like Leigh who is busy preparing for her
Awareness Booth at her local shopping mall.
Today I have written to several TV programs thanks to Carol who
started out by telling us that she sent a letter to Oprah and also
included a copy of the letter posted in the ARD Awareness thread
thumb tacked to the top of the message board threads.
Thanks Carol!!!
So take a look at your public access TV networks, cable or whatever
you have available, think about radio stations as well as local
newspapers. Most will ask you to limit your correspondence to 200
words or less, so compose your email in a word document and use the
word counter (you can find it under TOOLS) so you can keep track of
how many you have actually used. In the email to Andrew Denton from
a show called "Enough Rope" I managed to squeeze my message in using
203 words... I could be risking it not being read by going over, but
I couldn't send it without acknowledging my family and that was the
only thing I could consider revising, so here it is:
I live with a
horrible condition called Adhesions Related Disorder and it has
changed my life. I almost died during a hysterectomy in 2000 because
adhesions (scar tissue) had "glued" everything together making it
almost impossible for the surgeon to separate organs from nerves and
blood vessels. I began to haemorrhage during the latter part of the
procedure it was difficult to stop the bleeding. I then had an
incisional hernia repair five days later because half of my bowel
pushed through the muscle wall and opened my wound from the inside
out. This has caused me to suffer with post traumatic stress
syndrome and to have a great fear of doctors and hospitals. Since
then I have had another six surgeries and will probably face more in
the future. I started a support group to help others like me because
not enough is known, there is little research apart from drug
companies experimenting and producing new "adhesions barriers" which
SOME surgeons use in subsequent surgery. I want to help others
understand what has happened to them and help them cope. I have four
daughters and a wonderful husband they along with my support group
work have sustained me during this difficult time.
I am hoping to get a spot on the shows
audience “show & tell segment. It will then allow me to give the
name of our support group, web address etc and will also be a great
way to celebrate ARD Awareness Day.
I also sent out an email to my local radio stations of which there
are two... one commercial and one community (where my husband
happens to be the Promotions and Marketing Manager). He has a
meeting with one of his program announcers tomorrow to see if he can
set up a guest spot for me and I am still waiting on a response from
the commercial station... so keep your fingers crossed ok?
The letter I sent to the radio station says this:
Hi,
My name is Joanne Eslick and I live in Bathurst and suffer from
a painful condition known internationally as "ARD" - Adhesions
Related Disorder.
Most doctors here in Australia would refer to it as "adhesive
disease"; it is a painful medical condition that causes abnormal
amounts of scar tissue to form following a surgical procedure; an
infection or trauma. Adhesions are fibrous bands that can connect
tissue and organs that are normally separate. Adhesions form like
glad wrap; others can be very thick and dense.
I also suffered with Endometriosis which wasn't diagnosed until
2001 when my ovaries were surgically removed because they had become
attached to the vaginal vault with adhesions (scar tissue). This
followed on from a very harrowing hysterectomy the year before and
an emergency incisional hernia repair. Since February 2000 I have
endured eight surgeries and continue to live with incredible,
debilitating pain completely changing my life. It was a combination
of Endometriosis and repeated surgery that caused me to suffer the
affects of ARD.
In January 2002 I launched an online support group for ARD
sufferers called Bombobeach.com and today I have members in
Australia, New Zealand, Canada and the USA. Not a great deal is
known about ARD and why some people suffer from this devastating
condition which can lead to serious health issues, suicide and death
and others don't.
Statistical information available refers to the fact that 10% to
20% of women of child bearing age/ about 5.5 million suffer from
endometriosis which is more than AIDS or cancer!
Nearly 1 out of 7 American women between the ages of 18 & 50
suffer from chronic pelvic pain which accounts for 20% of all
laparoscopic surgeries and 12% to 16% of all hysterectomies.
30% of adhesions patients are symptomatic.
55 - 94% of patients having abdominal surgery will develop
post-operative surgical adhesions.
300,000 hospital admissions in the U.S. per year for patients
with adhesions, which is more than heart bypass or appendectomies!
Of the 30% of adhesions sufferers admitted;
49% to 74% have small bowel obstruction
15% to 20% are infertility cases
20% to 50% are chronic pelvic pain cases!
What is most disappointing is that the medical profession is
divided about whether adhesions cause pain or not! Little research
is being done apart from drug companies who are developing
“adhesions barriers” used in subsequent surgery to reduce the risk
of scar tissue reforming.
In order to create awareness in the community, to encourage
research and development of better treatments and to find a cure for
this devastating and insidious disorder we launched “ARD AWARENESS
DAY” in 2003 and since then we have encouraged our members to spread
the word in their local communities. I am hoping that [name of radio
station] will help me in this endeavour by talking about this
important issue on your radio station. I would be willing to talk to
one of your presenters and provide information and resources about
this disorder. My biggest concern is those out there who are
suffering alone, unaware of what is causing their pain, by creating
awareness, we hope not only to encourage the medical world to take
action and increase research, we hope to reach out to those who are
still struggling to cope with the devastating pain on their own.
PLEASE help me to help them.
I look forward to hearing from you soon, I can be contacted via
phone on ## #### #### any time.
Thank you,
Jo Eslick
Founder
Bombobeach.com Adhesions Support Group
www.bombobeach.com
PO Box 1919
Bathurst NSW 2795
Another idea is to have a morning or
afternoon tea at your place of work, perhaps you could make a cake
or some yummy biscuits and ask your boss if you can decorate your
tea room with posters and information about ARD and our support
group. Ask if it is ok for you to have an extended tea break so that
you can meet and greet each staff member as they come to enjoy your
yummy cake and hand them a brochure and let them know you are
available to answer any questions they might have. If you don't
work, perhaps you could invite your friends around for morning or
afternoon tea instead, perhaps they can help by bringing along a
plate themselves and the same applies, have posters and printed
information, brochures etc available for them to look at.
One of our other beach buddies Kim has a very enthusiastic young son
who takes a beach bucket & spade to school each year with the
Bombobeach logo stuck on it and filled with Bombobeach pins and
brochures to give out to teachers, auxiliary staff and students on
the day. He has always had a very positive response to this activity
and he has genuinely helped his mother to promote ARD.
One last thing... I am going to be making a new "visual aid" to help
me explain adhesions and what they can do this year... I intend
buying two sponge balls in different colours and using several
rubber bands and some sandwich wrap I am going to join them
together, distorting their shape, make it impossible to tell what
they really are and the fact that there is actually two of them.
Then when I am talking about what adhesions do I will hold up this
mess and tell them that the two sponge balls are just like our
organs and this is what adhesions can do and why it can hurt so much
and why our bladder, bowel and other organs fail to work properly
and can become inflamed etc.
I hope these ideas help... if any of you have ideas... PLEASE post
them here so that others can be encouraged by your efforts too!
Keep up the great work everyone, I'm very encouraged by what I have
heard so far, this will be our best ever Awareness Day!
Love & hugs,
Jo Eslick
Founder
Bombobeach.com Adhesions Support Group
For
Awareness Day, I educated my classmates AND teachers!!
If the stat's in viewing bombobeach jump, that's why! LOL
The teachers were horrified (these are trained RN's) at the horror
stories, and the students were concerned that people can live in
this kind of pain ....
so ... I spread the word to at LEAST 20 people !!!!
Happy Awareness Day!!
Kanga
Last updated:
18/11/2005
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BOMBOBEACH.COM
