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Lymph e-Channel SPECIAL EDITION
June 2011
In This Issue
· Welcome
· Who is Deborah Cordner
· Jobst Elvarex
· Sponsor A Patient
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Help CrossFit Finalist Deborah Cordner Support LE Patients by Donating to the 2011
MWGF Sponsorship Drive [http://r20.rs6.net/tn.jsp?llr=uwropkcab&et=1105926359692&s=8235&e=001f4yzH65_IxWdMx7bje1hgGhSyB2QD8URJTSMCJcFuGzamIYISL-pG2JfPg1Z5nylmtm7qkukrm3EVXEASKlkjUZtb1X8GHNq9Nr3MmXMeyWipPmNtg7I3WpofDD5wPHvObUYZOlr9Kw=]
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Patients: We want to share
your stories!
Don't forget to send us
a short paragraph of
your experiences with lymphedema and a picture for us to publish!
All submissions should go to robin@lymphnet.org [mailto:robin@lymphnet.org].
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Position Papers
Early Detection of Breast Cancer Related LE [http://r20.rs6.net/tn.jsp?llr=uwropkcab&et=1105926359692&s=8235&e=001f4yzH65_IxU1rdygeq2zw7jkN97iHmNpemeHzpuHIdovyozTZA41fZBElutAlBqYOsbaGp5Ja4O4uiz1lD6Uztgfzi-C1vC1mHfT7aQs-qpBCS6jWhHIHP5_C9UDBcHAxB5Kby0FCAqpOFt2lrAzCA==]
Diagnosis & Treatment of Lymphedema [http://r20.rs6.net/tn.jsp?llr=uwropkcab&et=1105926359692&s=8235&e=001f4yzH65_IxUmXKsT8AknFXbHMea1lcifGiLHt2shBzXLfuQKQHsztSqPXqSx_WxhSoh80OsHoKdhc3HozepHHcD12W3Ngk4e8TVo4lDiQFoGmsbkdI3Byd1lZr9G7qAfNUXRBk2WT6jycz7e4tX4Sg==]
Air Travel [http://r20.rs6.net/tn.jsp?llr=uwropkcab&et=1105926359692&s=8235&e=001f4yzH65_IxXttptXswRM_ZohbjOEkExPjlZ32YwPbJ69AkJXyt0Il5wu3fTWQ766I8p12kHbgTUeGvtYTvujNd4kZXs5SWgjTcJ8fpT958bLvVrzZHSXz-6puzQlBVyQhtWKl_dKiGcAZ5dkGsYDqkJHcn8O1zA-6YXoWV-DVqmR08wwLvVFk5H73K3B1JIiS8q_8z-JbTE=]
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Quick Links
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10th NLN Conference [http://r20.rs6.net/tn.jsp?llr=uwropkcab&et=1105926359692&s=8235&e=001f4yzH65_IxWC-ntno5B0f8vdh0FNXRCVlXnN6GAGXTbaUk7cNDtcNALFCqLBPbfoJPRaVag3zdUjsWv5Dp8xagesmspNcA6Ww1SMlLxatj3Jpl1W0nVrhjAurQhsHSb3pq2ug8XH6X6JkULWDIqH1A==]
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Welcome to the Special Edition of Lymph e-Channel
Dear friends of the NLN,
Over the years I have met many amazing LE Patients, and Deborah Cordner is no exception.
Her story is truly inspirational and she exemplifies human resilience and determination
even after suffering great personal loss.
At the University of Northern Iowa, Deborah quickly became known as a track and
field champion - taking top prize in many competitions. But in the midst of her
athletic career, she developed lymphedema shortly after having a lipoma removed
from her left groin. After realizing that this was a chronic lifelong condition,
Deborah struggled with the news. Her life as a first class athlete, as she knew
it, had abruptly come to an end.
Fortunately, Deborah was introduced to Carrie Macosky, an experienced LE therapist
at Fairview Hospital in Minneapolis. Carrie not only treated Deborah but reassured
her that she could run competitively again as long as she took care of her leg on
a day to day basis. With renewed vigor and hope, Deborah decided to start taking
control of her lymphedema and to start running again. Through her persistence,
she eventually completed her first 5k race - the first of many more.
Deborah's comeback did not stop there. In 2009, Deborah discovered CrossFit, a strength
and conditioning program, at her local gym. Recognizing her talent, Deborah's trainer
encouraged her to enter the CrossFit Games. These games involve a series of tasks
across different disciplines including gymnastics, power lifting, lengthly runs,
climbing, rope and weight lifting, among other grueling exercises. With intensive
training, she recently passed the open qualifiers and regional competition (in her
age group) to earn a spot among the top 100 competitors in the world.
On July 29th Deborah will be competing in Carson, California during the World CrossFit
games where the "Fittest Person on Earth" will be crowned.
Deborah's accomplishments are truly amazing, and aside from her personal goals,
she contacted me because she wanted to do more and help others like herself. By
drawing attention worldwide at the CrossFit games, Deborah wants to show other lymphedema
patients that you can still engage your passions and have a life "living with lymphedema".
Deborah also wishes to support patients who do not have insurance or funds to cover
much needed garments. So through the CrossFit games, Deborah is hoping to raise
support for the Marilyn Westbrook Garment Fund (MWGF). We sincerely hope you will
join her efforts and make a pledge on behalf of Deborah's success.
https://www.lymphnet.org/donationFormMWGF.htm [http://r20.rs6.net/tn.jsp?llr=uwropkcab&et=1105926359692&s=8235&e=001f4yzH65_IxWjT4xqYQa0UvP9xBPPexYKEB5dOMYJUI_GYKnIZNN559BTnYSMfWBxVYRE5-hDf19NaLSeJJ0CNY1RDucfN6RdTXSri0rzogrr7Ax1tllWnNWBG-NlDY3b-1J7U7-joTc=]
Once more I applaud Deborah. Her participation in the CrossFit games is the ultimate
test of strength, endurance, and perseverance. She truly is a lymphedema star.
For further information about CrossFit and the World Championship or to buy tickets
to the games you can visit http://games.crossfit.com/ [http://r20.rs6.net/tn.jsp?llr=uwropkcab&et=1105926359692&s=8235&e=001f4yzH65_IxXti_qLT9BIG6WtJXnYvs516IYyisjLKch5Pak7WOpRsekypzHdYwmMMKVGVDr7E2AT_74wzNZu6-6ZUIbf7rvX4g9eOhP4-S0OGF4-Z8BbGw==]
Also if you would like to contact Deborah directly you can email her at deborahcordner@gmail.com
[mailto:deborahcordner@gmail.com]. She is rigorously training before the competition
and would appreciate your encouragement and well wishes.
Go for the top Deborah!
Respectfully,
Saskia RJ Thiadens, RN
Executive Director, NLN
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Who is Deborah Cordner?
In my early teens, I was an elite level gymnast, participating in competitions all
over the US. In high school, I was a sprinter whose speed and versatility was since
unmatched in the track and field world in Minnesota. When I graduated, I entered
my first year at the University of Northern Iowa with a full scholarship competing
in Track and Field. Who I was could be defined by a single word - athlete.
After being crowned the 2000 Missouri Valley Conference Champion in the 400m dash
outdoors, my promising athletic career was only beginning to develop. Everything
changed during my third year of college, when I noticed a lump in my upper left
groin. After countless MRIs and being poked and prodded, the doctors decided it
was just a harmless deposit of subcutaneous fat. However, it caused a lot of pain
and hindered my performance, so I decided to have it removed that summer. After
surgery, I experienced swelling in my left leg which did not subside. There were
occasional episodes of swelling but nothing alarming until one practice in the
fall of 2002. After my workout, my leg started swelling before my eyes. I immediately
sought medical attention, but even multiple doctors could not determine the cause.
I returned home to Minneapolis to see a University of Minnesota specialist, Carrie
Macoskey, who finally diagnosed me with lymphedema. She told me I would have to
give up track since it would cause too much trauma to my affected limb. I was devastated
to say the least; about the abrupt end of my track and field career and the uncertainty
of how the rest of my life would pan out.
I was in complete denial. I tend to fight everything off, but I found over the months
that this was one thing I couldn't "shake". I went nights without wrapping and
days without wearing my Elvarex stocking. During my remaining months on campus,
I tried to blend in by wearing shorts and dresses. I felt self-conscious with my
leg even in jeans, and I had difficulty finding clothes that would hide it properly.
Many times, I hoped the lymphedema would go away because I wanted it to. I cried
while wrapping my leg at night and frowned in the mornings when I had to put on
my garment. I began surrendering to my lymphedema, and I felt I had to figure out
who I was all over again.
Soon after moving home I was set up on a date with a man named Patrick Carson. I
was very insecure, as any 23 year old woman might be on a first date, but in a
different way because I constantly thought, "What will he think when he sees my
leg, and what I have to do with it?". On our first date, I decided not to wear
my Elvarex stocking underneath my jeans. I reasoned that this might help me feel
more "normal", but by the end of the night I was limping slightly and Patrick asked
me if I was okay. I felt very comfortable around Patrick so I told him my story.
Start to finish. And just as soon as I told him, he was over it. I couldn't believe
it didn't phase him one bit. I expected the worst case scenario and that he would
run away while calling me a freak. It was a blessing that my lymphedema didn't
bother him, but it was also hard because it still bothered me, quite a bit.
About six months into dating (and one episode of cellulitus that took both of us
for a ride; thankfully I was okay) I was going through a particularly bad period
when my leg was very swollen and unresponsive to anything I tried. I was inconsolable.
I was beside myself with the reality of my lymphedema and physically weak worrying
about how I would live the rest of my life.
Frustrated and angry, I tearfully asked Patrick, "Why did I get this? Of the people
in the entire world, why me?"
He answered simply, "Why not you? You have shown me that you are the strongest,
most resilient person I know, if anyone can fight this in the whole world, you can.
I'm not worried about you Deborah Cordner. Never have, never will be. You are
a fighter."
And that was it. After that, I started LIVING with my lymphedema.
Due to the months of lessened activity I gained some weight so I started walking
in order to lose a few pounds and manage my leg. This lasted a week. Anyone who
knows a sprinter knows how much they hate walking. It's the worst, you feel like
you get nowhere, fast. I started jogging/walking and gradually worked my way up
to jogging straight for 20 minutes. Eventually I signed up for my first 5k race
and completed it in 25 minutes. I kept making time goals and continued training
until I reached my goal of under 19 minutes. Through it all I was losing body
fat and my leg was surprisingly very manageable. I found myself really CARING for
my leg - checking it every morning and giving it a good, well thought out, wrap
every night. In addition, my relationships with my family and friends flourished
and I was seeing a future with this thing I had called lymphedema.
Over the years I became very proficient in wrapping and taking care of my leg; and
learning how to deal with the spontaneity of life. I spent a few years getting
my Masters in Sport Management in upstate New York at the State University of Cortland.
I became a track coach at the same university and also an NCAA Intern for two years.
I continued to run, do yoga, and basically try anything to stay fit. I did not let
my leg define what I was able to do in life. On a cold December run in 2009, I stumbled
into a CrossFit gym and met, my now coach, Tyler Quinn, co-Owner of CrossFit St.
Paul and CrossFit Minneapolis. He led me through a workout and convinced me that
I needed to do this and that I really had no choice; he felt I had a talent for
this. I agreed to start working out, but not competing. Mentally, I wasn't ready
and I wasn't sure how my leg would hold up. Over the course of that year I slowly
increased my training until I was training 4-5 days a week. In the summer of 2010,
I quietly decided that I would compete and try to qualify for the 2011 Reebok CrossFit
Games. I told my coach, Patrick, and my close friends and family, and so my journey
began.
After competing for 6 weeks in the open competition this past March, I was ranked
#1 in the North Central Region and #20 in the World. I was beside myself. I thought
my days of competing were behind me when I developed lymphedema; and now I feel
I'm only coming to the pinnacle of my athletic career. After 3 grueling days of
competition at the Reebok CrossFit North Central Regional competition, I secured
a position to qualify for the 2011 Reebok CrossFit Games! The Reebok CrossFit Games
is billed to be a competition on who will be crowned the "fittest person" in the
world. It's crazy that I am competing for this title with a condition that I was
told would limit me to light or very moderate exercise for the rest of my life.
After it all, I couldn't have accomplished it without the support of, my family
and friends and the CrossFit St. Paul and CrossFit Minneapolis community. I am
also thankful for the support of my lymphedema therapist Carrie Macoskey who continues
to help me maintain my lympedmena with MLD treatments and Jobst Elvarex garments.
As I continue my training to compete with the best at the 2011 Reebok CrossFit Games
July 29th-31st in Carson, CA; I am humbled by where I was when I started this journey.
Would I have been the same person without lymphedema? Would I even think of competing
to be the fittest in the World? The truth is probably not. Something about having
lymphedema has forced me to take control of my life and my destiny in a way that
I may have never imagined. Mediocrity is not okay for me anymore, there are no
barriers in my life. A barrier is merely a challenge. I welcome challenges; anyone
who lives a life with a chronic disease faces challenges every day. The beautiful
thing is you only have one choice; you HAVE to conquer it. I am grateful to my lymphedema.
Every day my lymphedema continues to teach me new lessons, it makes me stronger,
and most of all it pushes me to be a better person.
Now, if you wonder who is Deborah Cordner? I hope you think 'She's an athlete,
who also has lymphedema.'
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Custom Fit Jobst Elvarex
Patient Review:
Since I was diagnosed with lymphedema in 2002, I have only been able to maintain
a high quality of life because of my Jobst Elvarex garment. None of the other custom
garments that I hJobst Elvarex Garments [http://r20.rs6.net/tn.jsp?llr=uwropkcab&et=1105926359692&s=8235&e=001f4yzH65_IxULqvLaMpOvWkqn3mNCOIloATaiOo5RPcHzXCgDaCuh8e_lld19LsbgzdHjTG_u3BcosofJmyLYkGqM1YwTyBkFCwemOCr_DaPNtwgNU3Rjpg==]ave
tried over the years have provided me with the consistent support that my Jobst
Elvarex does. My garments always fit my leg perfectly and the silicone beads on
the top help it to stay in place. The fabric provides excellent compression without
being too difficult to put on or irritating my skin. I couldn't lead such an active
life without my Elvarex, period. It wouldn't be possible.
Deborah Cordner
deborahcordner@gmail.com [mailto:deborahcordner@gmail.com]
Therapist Review:
I met Deborah spring break of her senior year in college. She had a lipoma that
put pressure on her inguinal lymph nodes, which was removed via liposuction furthering
the problem. She was devastated by the loss of her last year in track. She returned
to school and came back for an intensive 4 week course of treatment that summer
break. I have known her for 10 years now. Deb is passionate not only in her athletics,
but in the care of her leg as well. She wraps her leg nightly and wears a Jobst
Elvarex every day - yes, even to the beach. At this point in Deborah's therapy we've
tried all kinds of garments, but we have found that the Elvarex garment works best
for her. It controls her lymphedema well and the fit comes back consistently perfect.
It has done a good job for her intensive fitness program. This spring was the best
I have ever seen her leg. Before this year she found running alone exacerbated her
symptoms. The CrossFit training seems to be a perfect fit for her and I'm proud
that she is helping others with the Marilyn Westbrook garment fund.
Carrie Macoskey, OTR/L, CLT/LANA
Fairview Edema Treatment Centers, Minneapolis, MN
CMACOSK1@Fairview.org [mailto:CMACOSK1@Fairview.org]
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
MWGF Fund Raising [http://r20.rs6.net/tn.jsp?llr=uwropkcab&et=1105926359692&s=8235&e=001f4yzH65_IxWwM51Ut7pUiABsSdL7Q7pkugck8siklR0PEAZdEE0k9eTV1Q3a9ikcSTAiVJnekmQwKwEdNkfV-mary_goCN-TTlQhsPdjh-PuhsytXZZKpna2kE92xjUKhNyht0669nLs7OM5neEsmA==]
Help Deborah Cordner Support LE Patients Through the Marilyn Westbrook Garment Fund
The Marilyn Westbrook Garment Fund (MWGF) [http://r20.rs6.net/tn.jsp?llr=uwropkcab&et=1105926359692&s=8235&e=001f4yzH65_IxUtcIUaFvpk9tQ63DCDQ75a06Sx8DajPdkTSCVe1oSY6cKHVrJWbZADxpPr-OA1Ki0G2pyGGJc2Ip8i_VTDoePN4HMwMtRxfWAImsxr9gLoMNTY9hC1JNnfV0wVNlm1FG1wKkjmWHWrsg==]
has been a huge gift to many of our lymphedema patients.
Since May, 2008 the fund has alleviated suffering and improved the quality of life
for both young and old who are affected by lymphedema. It was Marilyn Westbrook's
wish to ensure that no other person with lymphedema would have to suffer as she
did prior to her death. Fueled by this simple yet beautiful request, many have
answered Marilyn's wish and today we have changed many lymphedema patients'
lives with the fund. Our hope is to be able to reach out to many more patients,
with the ultimate goal of offering coverage for LE treatment.
MWGF Sponsor A Patient Campaign [http://r20.rs6.net/tn.jsp?llr=uwropkcab&et=1105926359692&s=8235&e=001f4yzH65_IxWwM51Ut7pUiABsSdL7Q7pkugck8siklR0PEAZdEE0k9eTV1Q3a9ikcSTAiVJnekmQwKwEdNkfV-mary_goCN-TTlQhsPdjh-PuhsytXZZKpna2kE92xjUKhNyht0669nLs7OM5neEsmA==]
You can help!
This year we plan to raise at least $25,000 to continue the work of the MWGF. Please
join us in our efforts by supporting the fund.
As part of our Sponsor-A-Patient Campaign, a $50 pledge will support one patient
by:
* Sponsoring a patient's application including a yearly membership to the NLN
* Covering program costs to administer and continue to grow the fund.
For only $50 you can positively affect someone's life. But don't feel limited by
one amount; you can make a contribution in any amount. Large or small, every dollar
helps support more patients. Donors can also choose to have their name and/or logo
listed. Check back frequently to track our progress on the thermometer.
Click Here [http://r20.rs6.net/tn.jsp?llr=uwropkcab&et=1105926359692&s=8235&e=001f4yzH65_IxWjT4xqYQa0UvP9xBPPexYKEB5dOMYJUI_GYKnIZNN559BTnYSMfWBxVYRE5-hDf19NaLSeJJ0CNY1RDucfN6RdTXSri0rzogrr7Ax1tllWnNWBG-NlDY3b-1J7U7-joTc=]
to make a donation to the MWGF and please specify in the comments section that your
donation is for MWGF.
We would also like to give a special thanks to our amazing industry partners. Without
their support this program would not be a reality. To see our many industry supporters
please visit our website: http://lymphnet.org/mwgf/sponsors [http://r20.rs6.net/tn.jsp?llr=uwropkcab&et=1105926359692&s=8235&e=001f4yzH65_IxVeGB0LCcWvQTg-TYXHovSNS5pmm-dC4LlM1hCSFmw6jv8pAZRkq2RqvSp-8OahI64JO8cYZN1zlpmLSUXdCUAcodwzkOsrfILtwc5M42vstmfDQ0Bw0BtH]
On behalf of the many patients, therapists, affiliated clinics, my staff, and me,
we thank you from the bottom of our hearts.
Respectfully,
Saskia RJ Thiadens, RN
Executive Director, NLN
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
National Lymphedema Network, Inc.
116 New Montgomery Street, Suite 235
San Francisco, CA 94105
Hotline: 1.800.541.3259
Tel: 415.908.3681
Find us on Facebook [http://r20.rs6.net/tn.jsp?llr=uwropkcab&et=1105926359692&s=8235&e=001f4yzH65_IxUA3P09vwb7pduWjYehqd4rm78hkQu2spSZM2XKM5RdfGdkuutNeeSJ-5ZBpZsLA0-AG4aAiUeEawwLtsuRNyheIyScIOOCePm3wRdJorXgU-AsKmpigdnuYCS_4VMqq1LFj6X7ggYy0pM07zebjIeERuqqHzZcRnUW7L7h2w5QXQ==]
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The inclusion of advertising, logos or Web site links within this electronic publication
does not constitute an endorsement by the National Lymphedema Network, Inc. of the
products or services so advertised.
Before starting any new exercise regimen, please consult with your physician and/or
lymphedema therapist.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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