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You cant light a spark if you
dont first carry
a flamewe
are all heroes
and friends.
Melissa Etheridge
DECEMBER 2007
L O O S E CONNECTIONS
www.ednf.org
TABLE OF CONTENTSWINTER 2007
FEATURES
Why Does EDS Matter? ......8This is Whats Important ..21
MEDICAL
Ask the Doctor ....................6How to Live Well with
Chronic Pain ......................15
CONFERENCE
Special Section ............ 11-14
DONORS
2007 Donors, Memorialsand Tributes ................ 16-20
MEMBERSHIP & NEWS
EDNF 2008 Theme .............2Triple It!
...........................3EDNF News .................... 3-7Sabal
Fdn., San Diego ..... 8-9Kids & Teens
.....................14Board of Directors
...............2Submissions Guidelines ......3Membership Form
.............23
COVER: THE VERY FIRST LOOSE CONNECTIONS IN 1986
PAGE 11: 2008 CONFERENCE SECTION
PAGE 16: DONORS, MEMORIALS & TRIBUTES
INSIDE: PAIN MANAGEMENT M.R.G.
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L O O S E CONNECTIONS
PUBLISHERS INDEX
Published Quarterly by
Ehlers-Danlos
National Foundation
FOUNDER
Nancy Hanna Rogowski
1957 1995
President & CEO
Cindy Lauren
Board of Directors
Robin Coppi
Michele Darwin
Richard Goldenhersh
Jeanne Kingsbury
Cindy Lauren
Charlotte Mecum
Professional Advisory
Network
Patrick Agnew, DPM
Peter Byers, MD
Edith Cheng, MD
Joseph Coselli, MD, FACC
Joseph Ernest III, MD
Clair Francomano, MD
Tamison Jewett, MD
Mark Lavallee, MD
Howard Levy, MD, PhD
Nazli McDonnell, MD, PhD
Dianna Milewicz, MD, PhD
Anna Mitchell, MD, PhD
Raman Mitra, MD, PhD
Linda Neumann-Potash, RN, MN
Terry Olson, PT
Mary F. Otterson, MD, MS
Melanie Pepin, MS, CSG
Elizabeth Russell, MD
Ulrike Schwarze, MD
Karen Sparrow, PhD
Brad Tinkle, MD, PhD
Mike Yergler, MD
Editor
Barbara Goldenhersh, PhD
Graphics/Type
Mark C. Martino
PAGE TWO WINTER 2007
EDNF ANNOUNCES 2008 THEMEBY BARBARA GOLDENHERSH, PhD
For 2008, EDNF has decided to honor its volunteers, those
without whom the organization could not do its work, and look to
those who now understand the necessity for every individual to
volunteer and take a part in their own well-being. There are so
many thoughts directing us to this end, so many prayers and wishes
that have gone unanswered. These require each of us to step up and
do our part.
The words of our prayers must not fall off our lips like dead
leaves in autumn. They must rise like birds out of the heart into
the vast expanse of eternity. Abraham J. Heschel
During the coming year, let us do all the things which we meant
to do some day, but which we have postponed or neglected. If we
have been waiting to perform an act of charity, to discharge a
duty, to assume a responsibility, let us do these things now. Help
us to proceed with all haste to do now this day, this week, this
year all the things that will make this a year of achievement,
growth, and blessing for each of us.
Internalize these thoughts and realize what each of us, what
you, can do to improve our lives and those of our fellow EDSers. If
you have not yet stepped up to volunteer, let these words adapted
from a book of prayer encourage you.
Our physical characteristics may be determined by heredity, but
our human stature we fashion for ourselves.
Our environment determines the language we speak, but it is we
who determine
whether our words are cruel or gentle, cutting or
comforting.
Because we are free to choose, we are capable of change. We can
give a new direction to our lives. Take meaning from the
realization that we have responsibility for yesterday, opportunity
for tomorrow, and choices to be made today. Only that which compels
us to live in mutual helpfulness enables us to overcome what each
of us faces as we deal with EDS.
EDNF themes guide the Foundation based on the overriding needs,
interests, and experiences of the membership. Research was the 2005
focus: EDNF raised over $80,000 toward that end. Those monies were
rewarded by the recently published outcomes described in the Fall
2007 Loose Connections. The 2006 theme of Awareness produced May
Awareness Month and the Patient Brochure (available for download
from ednf.org). The 2007 theme emphasized Educating the Medical
Community: Teaching the Doctors. During this year, EDNF began its
series of Medical Resource Guides for the medical community, with
individual specialty MRGs underway an ongoing project as EDNF
endeavors to share information with both doctors and
institutions.
Every individual has a place to fill in the world, and is
important, in some respect, whether he chooses to be so or not.
Nathaniel Hawthorne (1804-1864)
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GUIDELINES FOR SUBMISSIONSTO LOOSE CONNECTIONS
For text documents, use Helvetica or Times of at least 10 points
(preferably 12 to 16) in size, so our editors can easily read your
document and prepare it for publication. Attach the text document
in either Word (.doc) or Rich Text Format (.rtf) to an e-mail sent
to [email protected] that also tells us how to reach you for more
information.
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send three to five images that are at least 2400 x 3000 pixels (300
dpi resolution & 8 x 10 inches) and without compression beyond
that per-formed by the camera when it was taken. In the e-mail,
please identify the event or cause for the photographs, including
any relevant iden-tification (persons involved, date, photographers
name if needed) and how to reach you for more information.
Following are the deadlines for the next year of four issues;
special arrangements can be made with the editors before these
dates, but not afterwards.
PUBLISHED ON
FEATURES DUE
COLUMNS DUE
SPRING 08 MAR 14 JAN 25 FEB 15
SUMMER 08 JUNE 22 MAY 11 MAY 25
FALL 08 SEP 8 JULY 18 AUG 15
WINTER 08 DEC 12 OCT 20 NOV 3
Text articles, photographs, or any other submissions to Loose
Connections are accepted only on condition that publication of that
material is not under copyright or other restrictions on its
publication. Ehlers-Danlos National Foundation reserves all and
final editorial privileges, including the right to choose not to
print a submitted story; submissions may be edited at the
discretion of the editorial staff.
The opinions expressed in Loose Connections are those of the
contributors, authors, or advertisers, and do not necessarily
reflect the views of Ehlers-Danlos National Foundation, Inc., the
editorial staff, Professional Advisory Network, or the Board of
Directors.
EDNF does not endorse any products.
1.
2.
3.
L O O S E CONNECTIONSWINTER 2007 PAGE THREE
TURN $25 INTO $75TRIPLE IT!
EhlErs-Danlos National Foundation is very pleased to announce
the return of Triple It! This popular and successful fundraiser is
offered by an anonymous donor for a second year. After seeing the
inaccurate TV portrayal of EDS, our donor has asked that all
donations in this campaign go toward raising awareness of EDS. With
the generosity and support of EDNF members and friends like you, we
can surpass last years outstanding results.
Visit www.firstgiving.com/tripleEDNFto make an on-line credit
card donation.
Or send your check directly to EDNF (3200 Wilshire Blvd., Ste.
1601, South Tower, Los Angeles, CA 90010) and mark Triple It! in
the memo section. This offer expires December 31, 2007.
How does Triple It! work? Our donor has partnered with a
corporation, each matching your gift. So $25 becomes $75, $50
becomes $150, $100 becomes $300up to $5,250 will be matched by the
donor and up to $5,250 by the corporation, so we can turn your
combined donations of $5,250 into $15,750.
But we cant do this without you, our members and friends.
Together we can seize this wonderful opportunity: please donate to
the Triple It! Raising Awareness campaign between now and December
31, 2007. Your tax-deductible donation will be recognized in the
next Loose Connections, and you can feel good knowing youve helped
get out the word about what its really like to live every day with
EDS.
New Office ManagerFirst anniversary of The HingeStarted
quarterly PAN HingeAdded six new members to PANTaxicab tops, San
DiegoABC specialProduced and shipped EDS MRGDental MRGAcquired
Purdue Pharma grant to produce Pain Management MRGIntroduction of
EDNF Kids and Teens program/newsletter: Carepages, Volunteer
Service of America programReorganization of the website, expansion
of boards and medical articles, glossaryHuman Race, Marin County,
CAHuman Race, Greensboro, NCSunburst 1000, MichiganPlanning for MRG
program, Baltimore, March Planning for 2008, Los Angeles, September
Completion and publication of two EDS studies funded by EDNF
Conference Participation:
American Academy of Dermatology, Annual MeetingAmerican College
of HematologyAmerican Osteopathic Association, National
MeetingChronic Fatigue Association, PANDORACoalition of Skins
Diseases, Development Day Dermatological Nurses Association, Annual
MeetingImmune Deficiency Foundation, National Conference Internal
Medicine/American College of Physicians Society for Investigative
DermatologyUS Psychiatric Congress
EDNF 2007HIGHLIGHTS
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L O O S E CONNECTIONSPAGE FOUR WINTER 2007
although I write this the week before Thanksgiving, you will
read it in December and we will be looking at 2008. Doesnt it seem
that just yesterday everyone was worried about Y2K? Time flies,
whether we want it to or not. Every day we move toward our future;
and I believe we can affect how that future can look every day.
The experience of Ehlers-Danlos is a tough one: there is not a
single gene, a single type of doctor or standardized regimen for
treatment, there is no cure. There is no national EDS center
housing genetic, diagnostic, or therapeutic specialists and
researchers. Patients
are left to fend for themselves against uniformed physicians and
insensitive administrators, insurance companies and social agencies
that seem perplexed or simply incompetent. Parents struggle to
advocate for their children, or to discover what has been ailing
them for decades, some are suddenly confronted with a devastating
loss. For many, a diagnosis is a mixed blessing;
it legitimizes their medical experience, but offers little for
hopes of a cure or significant intervention.
How do we change that? Presumably you have become a member of
EDNF to request, offer and share information, resources, support
and hope; to be part of a community who gets it, who understands
the challenges, the set backs, and the wonderful surprises that now
and again occur. In the last three years, I have seen the EDNF
community grow in many ways: the openness and welcome to new
members; the increase in knowledge, understanding and compassion
for each other; the growing awareness that EDS is real, and is
important to more people than we thought. Our Professional Advisory
Network has some of the best EDS practitioners in the US, and we
are attracting international attention our reach into the
healthcare community grows daily. This is all quite exciting, but
we have a long way to go.
The path is clear and the opportunities to continue this growth
and improvement are within our grasp. It is the collective voice of
EDNF that the healthcare communities, the donors and funders and
your communities hear; your membership is important for more than
access to the website, it tells the world you care enough to unify
and demand the changes you need and deserve.
The way forward is to support those who want to support you your
local group leaders have stepped up to be the face of EDNF in the
community and to help this organization get the attention you
require. The way forward is to speak up and to speak out. Dont just
attend the conference; be part of its architecture by volunteering.
EDNF is creating the resources that can help this mission but it is
you, each and every one, that has the power to make that message
stick.
I believe that each of you has the power to make today and
tomorrow better for yourselves, and so much better for those who
follow behind you. Your voices together are strong and powerful,
you can affect change, starting today. Together you can fight
ignorance, intolerance and insensitivity; all you need to do is
choose how you will be part of this voice.
Tomorrow holds much promise, be part of the change, let 2008 be
one of the best ever for EDNF and everyone who must walk the path
of EDS.
THE WAY FORWARDBY CYNTHIA LAUREN, CEO
Each of you has the power to make today and tomorrow better for
yourselves, and so much better for those who follow.
The greatest use
of life is to spend
it for something
that will outlast it.
William James(1842 -1910)
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L O O S E CONNECTIONSWINTER 2007 PAGE FIVE
as my time as Director of Local Groups for EDNF draws to a
close, I have thought a lot about the growth and the changes that
have taken place over the past five years. I have thought about the
Local Group Leaders, past and present, and how valuable the time is
that they voluntarily give to help other people with Ehlers-Danlos
syndrome to help them get through the days a little easier, as they
deal with the frustration, limitations and pain of EDS, knowing
that they are not alone in the struggle.
I leave this position possibly even more passionate about the
benefit of local groups than when I began. I took the position of
Director of Local Groups because I did believe in their
benefit and how important they could be to EDNF and to EDS
patients all across the country. As Director, I have talked to so
many people who, like me prior to learning about the Ehlers-Danlos
National Foundation twelve years ago, did not know that there were
others dealing with the same kinds of medical problems of EDS. The
joy and relief expressed by these individuals and families in
learning that there were people in their very own communities who
understood and whom they could talk to about the experiences of EDS
has been extremely powerful. Each individual I talked with
reinforced the knowledge of the vital role local groups play in
giving support to those living with EDS, spreading knowledge of EDS
to medical professionals, schools, and
CHARLOTTES FAREWELLAS DIRECTOR OF LOCAL GROUPSBY CHARLOTTE
MECUM
local governments, and increasing awareness of EDS to all parts
of our country and worldwide. EDNF cannot do this alone.
It is my hope that EDNF local groups will continue to grow and
flourish; that more and more people will see the importance and the
need for local groups and will be moved to volunteer their time to
organize and lead them in areas where none now exist.
Thank you for the opportunity to have worked with so many
dedicated individuals and to have served in the mission of EDNF in
a way that I found so gratifying. I look forward to continuing to
carry out the mission of EDNF in a new capacity.
DEcEmbEr 31st will mark the end of terms for board members Dave
Specht and Richard Blouse.
Mr. Specht joined the Board of Directors in the summer of 2001
and served as a Director at Large, Vice Chair and Chairman of the
Board 2006-2007.
Mr. Specht brought to the Board of Directors years of business
experience and added a new perspective to both the board and the
Foundation as a whole. He was able to guide the Foundation through
changes that lead the organi-zation to one which reflects a
business and corporate structure. The Jordan Specht Memorial Golf
Tournament and the efforts of the Specht family have provided
significant financial support to the Foundation and allowed EDNF
the opportunity to continue its work and
develop programs that may not have otherwise been realized.
The Board of Directors and EDNF would like to thank Dave for his
willingness to serve, guidance, and support for the Foundation as
it continues to achieve its goals and vision.
Thanks go to Richard Blouse as well for his service on the Board
of Directors.
Mr. Blouse brought to the board his experience of 35 years in
organizational management and offered multiple resources to both
the board and the staff of EDNF. Dick joined the board in 2005 as a
Director at Large. The following year Blouse served as Treasurer
and Chair of the Finance Committee, assisting with the financial
aspects of EDNF.
BOARD OF DIRECTORS CHANGES FOR 2008BY ROBIN COPPI, RN, BSN CCRN,
IMMEDIATE PAST CHAIR OF THE BOARD OF DIRECTORS
It has been a sincere pleasure to serve with these gentlemen and
the Board of Directors wishes to thank them for their time and
commitment to the Foundation.
Michele Darwin has joined the Board of Directors for 2008. Mrs.
Darwin serves as the Chair of the Kids and Teens program. She
established this program seeing a need within our membership, and
has raised funds to support the Foundation and the program.
Currently, Mrs. Darwin is working with the Conference Planning
Committee to ensure appropriate educational activities for Kids and
Teens at our upcoming conference in Houston.
The Board of Directors welcomes Michele Darwin and looks forward
to a successful year.
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L O O S E CONNECTIONS
A S K T H E D O C T O RPAGE SIX WINTER 2007
The Ask the Doctor series continues to seek answers to our
members questions and concerns. PAN member Terry Olson spoke to
doctors and membership at the 2005 EDNF conference in Los Angeles.
The transcript of that presentation and PowerPoint can be found on
the website. His article was published in Loose Connections, Winter
2005. Thank you for again stepping up to the plate to answer our
concerns. Ed.
Question: Are there exercise guidelines for the hypermobile type
of EDS as well as the hypermobility issues in other types? Please
share information regarding frequency, duration, and intensity?
Exercise is very appropriate, and necessary, for treatment and
management o f j o in t hypermobility. There are a number of ways
to initiate exercise, but the choice of exercise should be
predicated on whether pain is a factor, the extent of the
hypermobility, the effected joints, etc. Consultation with a
physical therapist, specifically a therapist trained in manual
therapy, is helpful to determine the most appropriate exercise.
Exercise should not be excessive trauma to already stressed
tissues, so emphasis on exercise with decreased joint loading, such
as pool, total gym, bike, can be helpful. When exercising with
weights, I advocate working the muscle in its shortened range of
motion, and only through a decreased portion of the range. An
example of this would be when doing a simple biceps curl. When you
start with the arms fully extended, the muscle is in its lengthened
range. This position puts the muscle in its weakest position,
thereby creating greater stress on the muscle, its tendon
insertion, and the underlying joint structures. When you continue
to bend the elbow completing the biceps curl you move into the
shortened range of motion for that exercise. In this range, the
muscle has its greatest strength. In this position of the exercise,
there is less stress on the muscle, its tendon insertion, and the
underlying joint structures. All exercises can be modified to
exercise in this range of decreased stress and loading. Rest is as
important as exercise, so you should provide a days rest between
exercise periods of any intensity. Typically, you can lift weights
three times a week, with a days rest in between exercise days.
There is a PowerPoint presen-tation on the EDNF website that
addresses many of these exercise principles, with photos of some
sample exercise setups. These are generalized comments on exercise,
with closing emphasis on the necessity of individualized
modifi-cation of any exercise program. The exercise program should
be modified to the individual so that
exercise can be stressful enough to promote changes in strength
and aerobic capacity, but performed in a range of motion that is
not promoting increased pain after having completed the
exercise.
Question: If a joint is subluxed or dislocated and you exercise
are you doing damage to that joint?
Yes. This relates back to previous question regarding importance
of exercise. The individual with history of joint subluxation can
exercise, but the exercise needs to be performed in a range of
motion where joint stability is occurring. This may be only a very
small range of motion exercise. Exercising in the range where
subluxation is allowed to occur, will lead to breakdown of the
joint, the surrounding joint structures, as well as increased
pain.
Question: Is stretching appropriate for hypermobile patients, if
not is there an alternative exercise? What is the best exercise for
muscle spasms?
In my experience, I do not teach stretching of the joints for
patients with joint hypermobility. Stretching out structures that
already exhibit greater than normal mobility seems
counterproductive, as well as leading to increased hypermobility
and pain. Muscle spasms occur as the body attempts to stabilize an
injured or unstable area. Strengthening of the supportive
structures around the joint, i.e., the musculature, has the benefit
of enhancing the stability of the joint and ultimately decreasing
the incidence of muscle spasms.
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L O O S E CONNECTIONSWINTER 2007 PAGE SEVEN
EDNF TEAMS WITH BEYOND BIPOLAR
on October 11-13, EDNF, represented by Cynthia Colabella of the
Central Florida Local Group, teamed up with Jane Mountain, MD,
author and publisher, to share a booth at the US Psychiatric
Congress held in Orlando, Florida. Collaborations like this help
our organization become strong and open doors to spreading our
message and helping to fulfill the mission of EDNF.
Having a booth at a national conference takes more work than one
might think. Donations from local groups and EDNF members
throughout the country, along with sharing the costs of the exhibit
booth allowed for the required registration fee.
It also helped that Cynthia, who lives in the area, was willing
to staff the exhibit booth, thus eliminating the cost of lodging
and travel.
The first task was to make the booth eye appealing for all.
Cynthia decorated the EDNF portion of the booth with white and
black zebra fabric, EDNF Tee Shirts and a stuffed zebra. Dr.
Mountains book covers delineated her half.
EDS is truly a zebra to conference clinicians who are looking
for the
horses of psychiatric illness. Cynthia networked and made EDNF
literature available to the 2,500 attendees of the conference, and
Dr. Jane Mountain presented and sold her two books, Bipolar
Disorder: Insights for Recovery and Beyond Bipolar: 7 Steps for
Wellness. Even though Ehlers-Danlos syndrome and bipolar disorder
are not related, the sharing of the booth was advantageous for both
EDNF and Dr. Mountain.
The result of EDNFs presence at this Conference was success.
Many attendees stopped at the booth because they were looking for
resources, or to learn what Ehlers-Danlos Syndrome is. Hundreds of
physicians and individuals were educated about EDS and were
introduced to our Foundation.
From her experience representing EDNF at this conference and at
others before, Cynthia offers some pointers to other local groups
that might want to provide a similar service at a conference:
Save money by teaming up on booth rental with another
organization or exhibitor.Be aware of possible costs like table and
chair rental and parking.
Allow plenty of time to set up your booth. Decorate your booth
so it is attractive and draws visitors.Provide plenty of volunteers
for your booth so they can take turns and get adequate rest while
working the show.Enjoy the chance to share what you know with
others and increase awareness and education about EDS/EDNF.
Thanks so much to EDNF, the members and local groups, especially
New Mexico Connects Local Group, Cynthia Colabella and Dr. Mountain
for making possible the exhibit booth at the 21st Annual
Psychiatric Congress and the educating of members of the
psychiatric profession about EDS.
If you would like to learn more about Dr. Mountain and Beyond
Bipolar, go to her website at www.BeyondBipolar.com.
To continue to help make a difference for EDNF patients and
families, please visit our website www.ednf.org, and ask family,
friends and co-workers to join EDNF. Every membership provides
support toward reaching the common goals we work so hard to
attain.
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L O O S E CONNECTIONSPAGE EIGHT WINTER 2007
Each year for the past six years, the EDS Sabal Foundation has
hosted a fundraiser to support the work of EDNF. These fundraising
events were inspired by Aaron Sabal who was diagnosed with EDS at
the age of two. He continues to be our inspiration and motivation
to help all of those that have any form of EDS.
The EDS Sabal Foundation was formed by Aaron Sabals family in
January 2002. We held our Sixth Annual Fundraiser on September 14,
2007, at Carriage Greens Country Club in Darien, Ilinois. It
included golf and dinner, as well as live and silent auctions. We
were again fortunate to have 120 golfers to whom we were able to
speak about where EDNF has come from, and, because of our help,
where it is going. We hope to continue to build on our financial
success and educate the public about EDS.
We are very proud of our support for EDNFs mission of raising
awareness and funding research.The EDS Sabal Foundation has donated
over $180,000 in the last six years. We hope others will join us in
the future and help us continue this vital mission by creating
fundraising and awareness events all over the country.
SABAL FOUNDATIONSSIXTH ANNUAL EDNF FUNDRAISERBY JEANNE
KINGSBURY
Without the help of these special people, the event would not
have been a success. Special thanks to: Bill Kingsbury, Tom &
Lori Sabal, Mike & Gisela Sabal, Tim & Janine Sabal, Liz
Beaman, and Pat & Al Sabal. Also, special thanks to all of our
volunteers that helped run the event.
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L O O S E CONNECTIONS
impressed that our website has additional information for
physicians, support for patients and family members, and they plan
to use this resource.
A few of the students were taking connective tissue classes and
one of the conference seminars mentioned EDS. The students were
inquisitive and asked good questions. They promised to remember the
Zebras! We have great hope for the next generation of MDs and DOs
to be more aware and knowledgeable about EDS.
We have written the Osteopathic Association, telling them of the
positive response from the doctors and how much AOA helped us
increase awareness. The association thanked us for being there; our
experience was very positive and one we cannot wait to repeat.
WINTER 2007 PAGE NINE
gracE Berardini, Terri Keyes and I held an EDS Exhibitors Booth
at the 112th Annual American Osteopathic Association conference
here in San Diego. We were the only non-profit among the AOA
booths, which included hospital recruiters and pharmacy reps. All
types of physicians attended, including dermatologists, emergency
physicians, psychiatrists, n e u r o l o g i s t s , p a t h o l o
g i s t s , pediatricians, rheumatologists, pain management,
schlerotherapy and sports medicine. Students, interns, residents
and interns were also there.
The physicians were given the opportunity to receive three CMEs
by visiting each exhibitors booth and getting a sheet signed. This
gave us a wonderful opportunity to reach many more doctors than we
normally would have. The first day was non-stop and we quickly
adopted Terris opening line Are you familiar with EDS?
as we slowly initialed their sheets! If they said yes, we asked
whether they had a patient with it. Many said they had never seen
one, which led us to share that 80% of people with EDS are not
diagnosed. Several doctors said, I believe it. Our experience is
the doctors get more receptive every year, wanting to know how to
diagnose and treat EDS. Once again, we met several DOs with EDS and
some with patients who have EDS! Thanks to our Information Board
that Terri Keyes and Grace Berardini put together, we have the top
ten signs of EDS to draw them to. It also has important info on the
vascular type and photos of hypermobility and our youngest local
group member, 18-month-old Chloe.
The physicians were very happy to receive the new MRGs and the
Facts brochure. Some told us they were not aware of the EDNF web
site and didnt know Ehlers-Danlos had its own Foundation. They
were
LOCAL GROUP OF GREATER SAN DIEGOAT AMERICAN OSTEOPATHIC ASSN.
CONFERENCEBY LANI WILSON
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L O O S E CONNECTIONSPAGE TEN WINTER 2007
During the last three years, EDNF has gone through aching
changes. When I started here in 2004, our Foundation was confused
about who we wanted to be, and how we were going to share our
message to the nation and world. But as we have slowly moved from
coffee table to conference table, EDNF has grown from a small group
reaching out for comfort into a nationwide network of patients,
families, caregivers, doctors, nurses and therapists. We are all
dedicated to telling the world that EDS is real, that it has real
effects and consequences and it deserves more than a sympathetic
ear and shoulder. The message must be shouted out: we are here, and
we matter!
Still we find many who have never heard of EDS, and many more
who simply dont care. If EDS were contagious and people were afraid
of catching it, awareness would be far easier to achieve. But how
do we engage the healthcare community, our social agencies, our
schools, who simply arent interested in the face of so many health
crises? While it is easy to fault an insensitive nurse or an
uncaring doctor, and sadly there are more than a few of those, most
are dedicated to helping patients and want to learn and know more.
How can you, how can we, make that happen?
It happens when the fight for awareness becomes personal. Every
doctor and nurse you meet can be another professional that is aware
of EDS, every person you know can be another face for EDS. When we
take the fight personally, when
we make EDS matter in the lives around us, we make it tangible
and meaningful to those around us.
It is up to you to make EDS matter. This is your life, the lives
of your family; no one can do this for you. There is no magic,
there is no white knight, there is no one who cares more than you,
and no one to whom it matters more. Make awareness happen.
All it takes is one little thing; whenever you can, take one
step outside yourself to reach someone else. That one little thing
makes EDS real and important because that someone met you. Speak
out. Share the strength of your story and struggle.
Instead of keeping Loose Connections in a drawer, share it with
someone else. Dont save the MRG or give it to your doctor who
already knows you, give it to someone new at that clinic, at that
office, at that practice. Forward The Hinge to your clinic and
school nurse, leave a sports poster for the P.E. instructors and
coaches. Carry brochures with you and drop them in waiting rooms.
When you visit a hospital or medical office, leave something behind
a General Brochure, an MRG. When youre sent to a new lab, dont go
empty-handed.
So many angry patients e-mail or call me, frustrated that their
medical staff have never heard of EDS, much less have any idea how
to help. But each negative encounter is a missed opportunity to
make a difference; not only for you but for every EDSer those
professionals may see and will
treat. No, they may not be expecting you, but you can anticipate
what they will need to understand. Be prepared before you go;
expect to be the unexpected and know how to answer their questions.
Help them help you, and you help everyone.
You must be a community of EDSers, not divided according to type
and competing with each other for who is most worthy, who is most
needful. You are all worthy of compassion, understanding and
healing, we need to make progress together. When you are separate
and possessive, your voice is weak and the urgency of EDS education
is lost. You share a common disorder and a common desire.
EDNF is to be shared among all who care and want change. While
the Foundation can provide structure for this cause, while we can
educate, provide information on treatment and research, it is each
of you who make EDS matter. You have the ability to make your world
a bit better, not just for you but for everyone else after you. You
have the power to strengthen yourself and EDNF simply by spreading
the word.
Awareness cannot, and will not, happen without each of you. Make
awareness happen.
WHY DOES E.D.S. MATTER?BY CYNTHIA LAUREN, CEO
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L O O S E CONNECTIONSWINTER 2007 PAGE ELEVEN
almost every day I receive an e-mail or phone call from a
distraught person who has chronic connective-tissue problems. Some
folks have diagnosed themselves with EDS, but they are looking for
validation. Some have been diagnosed with EDS, but their physician
doesnt know which type. And some have been definitively diagnosed
with a specific type of EDS, but their doctor states that he doesnt
know enough about EDS to treat them.
Tha t s why our L ea rn ing Conferences are so critical for
everyone who currently has EDS; as well as our children,
grandchildren, and friends who might have this devastating disorder
in the future.
My first EDS Conference was in 1991, in Seattle, Washington. I
was diagnosed with Vascular EDS a year before and went alone
because I didnt know another soul who had EDS and no one could go
with me. A slew of family members mother, grandfather,
aunt, uncle, cousins had died from ruptured aneurysms at 1355
years of age. I was not going to let that happen to me. And I wasnt
about to let my two teenagers die prematurely.
So I cut coupons, watched for rebates, and worked extra hours to
save enough for the Conference fee and airfare. Thats where I first
learned about beta-blockers, beta-blockers that I believe extended
my life and my childrens lives. I also met numerous friends who
were just like me and just as scared.
My life had new meaning and precious hope.
This year when you consider whether to go to the 2008
Conference, July 31August 2, 2008 in Houston, Texas, consider the
following points:
You will receive the latest updated information about EDS from
experts in the field.You will help the physicians learn from REAL
EDS patients.
REFLECTING ONE.D.S. CONFERENCESBY MICHELE HEGLER, E.D.N.F.
CONFERENCE DIRECTOR
2 0 0 8 C O N F E R E N C E F . A . Q .
You will hear about the latest studies and how to get into
them.You can ask doctors specific questions without the $200 office
visit fee.You will meet the dearest, life-long friends.You might
connect with a doctor who lives in your area.Youll be helping every
future EDS person to have an easier time than youve had.
And theres no price tag you can put on these benefits.
I hope to see you in Houston!
Q: What does the Conference fee cover?
A: Access to all the medical, CEUs, enrichment, and interactive
sessions; all your food except Friday evening; your goodie bag;
entrance to the Opening Reception, Awards Banquet, vendor rooms,
and silent auction; access to massage beds and hospitality room
and
snacks; and enrollment in Teens & Kids Programs.
Q: What CEUs are offered?
A: We have applied for 1214 Nursing and Physical Therapy
CEUs.
Q: Is the hotel included in the price?
A: Unfortunately, no. In fact, the Conference fee barely pays
for
the actual meals you eat. But the Renaissance Hotel has given us
the great rate of only $109/night. Just call 713-629-1200 and ask
for the EDNF rate. We also have some persons who want to share a
room. If you would like to do this, contact Lani Wilson at
[email protected].
CONTINUED
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L O O S E CONNECTIONSPAGE TWELVE WINTER 2007
SPOT L IGHT ON SP EAKERSAlthough we feel that every speaker at
the Conference is an expert in their fields, and one you dont want
to miss, we want to highlight a couple just to whet your appetite.
We will include more speaker bios and session synopses in the next
issues of Loose Connections and The Hinge. We will also post them
on the EDNF Conference website: click 2008 Conference at the top of
www.ednf.org, and then choose Speakers.
2 0 0 8 C O N F E R E N C E F . A . Q .Q: Will there be
childcare?
A: No. This year we have developed a comprehensive Kids Program
(4+) that will have sessions at the same time as the adults and the
teens have. Kids and teens have a reduced conference fee and will
eat with their parents.
Q: What things are needed for the Silent Auction?
A: Homemade items and sports memorabilia are great items.
Special pillows, splints, massage oils, and other new items to help
the EDS person also do quite well. Some groups are making baskets
of items from their neck of the woods. Please make certain that
your
item is clean and ready for sale before shipping. Contact Angel
Denardi at [email protected] for more details.
Q: Can I provide a scholarship for a loved one?
A: Absolutely! Conference fees make an excellent gift. You can
order a card from Judy Sobel at [email protected] and then
Joseph S. Coselli, MD, FACC, PhDEDNF PAN Member
Dr. Coselli is Chief of the Division of Cardiothoracic Surgery
and a Professor of Surgery at the Michael E. DeBakey Department of
Surgery at the Baylor College of Medicine. He is also the Chief of
Adult Cardiac Surgery at the Texas Heart Institute, and is the
Associate Chief at the St. Lukes Episcopal Hospital in Houston.
Having performed more than 2,000 abdominothoracic aneurysm repairs,
he is interna-tionally acclaimed as the worlds most successful
surgeon in this field.
Dr. Coselli has demonstrated a commitment to patients with
connective tissue disorders, such as Marfan Syndrome and EDS. He is
a long-standing member of the Professional Advisory Board of
the
National Marfan Foundation, and in 1997, was awarded the Marfan
Award for his outstanding contributions to the development of
Cardiovascular Surgical interventions and care for people afflicted
with connective tissue disorders. In 2001, after presenting a
summary of his 15-year experience in abdominothoracic aneurysm
repairs in Marfan patients at both the VIII Aortic Surgery
Symposium and the Fall Surgical Society meeting, he was awarded the
Michael E. DeBakey Research Excellence award for his contributions.
His ongoing research has provided critical information worldwide to
medical professionals who operate on patients with friable
tissues.
Nazli McDonnell, MD, PhD EDNF PAN Member
Astute, talented, and personable, Dr. McDonnell has devoted the
past four years to researching EDS, Marfan Syndrome, Sticklers, and
similar genetic disorders in her cutting-edge National Institute of
Health: projects: Clinical and Molecular Manifestations of
Heritable Disorders of Connective Tissue, Cerebrovascular Aneurysm:
Identification of Relatives at Risk and Familial Linkage Studies,
Characterization and Mapping of a new Connective Tissue Disorder
with Features Overlapping Those of Ehlers-Danlos, Marfan, and
Stickler Syndromes, Mutational Analysis in Stickler Syndrome, and
Mutational Analysis in Ehlers-Danlos Syndromes.
Of particular importance are her latest findings concerning EDS,
including the incidence of autonomic dysfunction; spine, endocrine,
and lipid abnormalities; sleep disturbance; bone density; and most
exciting: the discovery of an EDS-similar connective-tissue
disorder.
To accomplish great things, we must not only act but also dream,
not only plan but also believe.
Anatole France (1844-1924)
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L O O S E CONNECTIONSWINTER 2007 PAGE THIRTEEN
2 0 0 8 C O N F E R E N C E F . A . Q .
Were gearing up for another fabulous EDNF Learning Conference,
July 31August 2, 2008 at the Renaissance Hotel, in Houston, Texas.
You probably thought we couldnt top the extraor-dinary list of
speakers and topics from the 2006 Conference, but you would be
wrong. The 2008 Conference promises to be the best one yet.
Although we have several months to confirm all our speakers, here
are a few of the early medical session confirmations.
CONFIRMED SPEAKER SESSION NAMES
Patrick Agnew, DPM, Podiatry Your Feet and EDS
Joseph Coselli, MD, FACC, Surgery Cardiothoracic Surgery in
High-Risk Patients
Dianna Driscoll, DO, Therapeutic Optometry Your Eyes and EDS
Joseph Ernest III, MD, OB/GYN Pregnancy Issues
Henri Marcoux, DO, Chiropractor Chiropractic Therapies for EDS
Patients
Nazli McDonnell, MD, PhD, Genetics The Latest in EDS Genetics
Research
Elizabeth Russell, MD, Rheumatology The Role of the
Rheumatologist in EDS
Brad Tinkle, MD, PhD, Pediatric Genetics Sleep Disturbance and
Management in EDS
John Trowbridge, MD, Pain Management Prolotherapy for Pain
Denise McGinley, RN Nursing Tips for the ER
James Grotta, MD, Neurology Interventional Radiology
HOT TOPICSTOP-NOTCH SPEAKERS
Invited SpeakersPeter Byers, MD, PhD (Genetics Testing)Edith
Cheng, MD (OB/GYN) Jodi Danna, DDS (Dentistry)Clair Francomano, MD
(Human Genetics)Dianna Milewicz, MD, PhD (Vascular
Complications)Anna Mitchell, MD, PhD (Human Genetics)Terry
Olsen, PT (Physical Therapy)Melanie Pepin, MS, CSV (Genetics
Testing)
Peter Rowe, MD (Pediatrics: Chronic Fatigue Syndrome and
EDS)
Steven Schwartz, MD, FACC (Gastroenterology)
Ulrike Schwarze, MD (Genetics Testing)Marcia Willing, MD, PhD
(Pediatric Genetics)Mike Yergler, MD (Sports Medicine) Still needed
(Psychology, Orthopedist, Pain
Specialist)
In addition, we have scheduled Social Security representatives
and lawyers, service dogs, diet and nutrition, and Total Body
Recall Stay-Fit sessions.
ambassador
Conference Kids & TeensNoun: a person who acts as a
representative or promoter of a specified activity
How would YOU like to be our representative at the 2008
Conference by acting as an Ambassador? We are looking for
enthusiastic members (under the age of 18) to serve as our official
Ambassadors. It is a special opportunity for you to act on behalf
of EDNF, open to six of our younger members. If you are chosen, you
will receive a special packet and credentials as well as special
t-shirts to wear in Houston. Early in 2008, we will have on-line
chats as a group to plan together for the various roles you will
play at the conference. If you are currently attending a school
that requires community service hours, we will verify your hours as
part of this project. To apply, please contact EDNF Kids &
Teens by emailing [email protected] or by calling Michele
Darwin at (972) 208-2651.
ambassador
give it to your special person. If you want to do it
anonymously, you can pay by credit card and we can send the card to
the person and address you specify.
Q: Can I make a donation to the Conference fund?
A: Of course. I love these questions. Just send a check or
credit card info to EDNF, 3200 Wilshire Blvd, Ste. 1601, South
Tower, Los Angeles, CA 90010 and designate it as Conference
Donation.
Q: Can my doctor speak at the Conference?
A: Possibly. We would need a CV or resume and suggested topic.
All speakers must be approved
by the Conference Committee and the BOD.
Q: What is the Spirit of Togetherness Challenge (SOTC)?
A: Last year, In order to raise funds and have friendly
competition between the groups, we initiated the SOTC. The group
with the most
CONTINUED
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L O O S E CONNECTIONSPAGE FOURTEEN WINTER 2007
2 0 0 8 C O N F E R E N C E F . A . Q .
RichaRd Le Gellienne was quoted as saying, Stay the course,
light a star, change the world whereer you are. Across the board at
EDNF we work daily to stay the course. The programs we are working
on and developing for the youngest members are no exception. As we
continue to stay the course we continue to have more and more
exciting things to announce.
The thing that we are most excited about right now is the
comprehensive sessions we will be offering at the conference. There
will be sessions geared just for Kids & Teens. Along with
sessions on adapting your special needs in the school setting,
maintaining your positive attitudes while struggling with EDS and
coping mechanisms (to name a few), we are also pleased to announce
that a couple of the wonderful speakers have offered their time to
sit down in interactive sessions with our youth.
There will be some changes that we want you to be aware of, too.
In order to allow the kids and teens the opportunity to be open and
honest with their feelings, we are limiting the sessions to kids
only. Many children have asked for this and we feel there is great
value and want to honor their request. There will be comprehensive
printed material for each session that will be distributed to both
kids and their parents, but this year there will be no parents in
the sessions only adult committee volunteers. All sessions will be
age appropriate. In addition to the sessions, we also have some fun
things to look forward to like a pizza party!
The sessions for Kids & Teens are separate from any baby
sitting services that will be available. Look for more information
in the Spring issue of Loose Connections.
Its a Great Time!
EDNF would like to congratulate all of our young members who are
working on awareness issues in their communities. Collectively,
they are each doing their part to make a difference. We have
members raising money through FirstGiving, teaching their school
teachers and nurses about EDS, proudly wearing zebra prints around
town, collecting used cell phones, selling lemonade, participating
in Triathalons and of course educating their own physicians about
Ehlers-Danlos syndrome. Sometimes I am sure the easy thing to do is
sit back quietly and try not to be different. However, the things
that make you different are the things that make YOU. You are PURE
potential!
donations won an award. This year we will give more prizes. And
every group which donates at least $25 will earn a star on the
prestigious Walk of Fame. Contact Lisa Schoenberg at
[email protected] for more details.
Q: I know a vendor who might want to rent a booth. Whos in
charge of this?
A: Gracie Berardini is in charge of the vendor booths. You can
contact her at [email protected]. This is the best way for vendors to
get more customers, help the cause and get oodles of publicity.
Q: Who is handling sponsors?
A: You can contact Michele Hegler at
[email protected] for more details.
If you have additional questions, address them to Michele Hegler
at [email protected].
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L O O S E CONNECTIONSWINTER 2007 PAGE FIFTEEN
Rebecca Rengo-Kocher, MA, MSW, LCSW, ACSW, is a coach,
psychotherapist, speaker and educator with over 25 years of
experience. She is the president of the Missouri Pain Initiative
and author of Beyond Chronic Pain: A get-well guidebook to soothe
the body, mind and spirit. Rebecca has lived with chronic pain for
33 years.
its easy to feel overwhelmed when you live with chronic pain.
Every day life can be a struggle that seems impossible to overcome.
You push yourself with every ounce of energy right down to your
soul, and it feels like nothings there. Simple activities that
others take for granted can be a laborious undertaking, like
sitting to watch a child or grandchilds little league game, going
grocery shopping or trying to concentrate during a meeting.
Its especially frustrating when family, friends, even doctors
and nurses tell you that you should be feeling better, youre not
trying hard enough, youre addicted to pain pills or that youre just
a complainer. Exhausted, depressed and hurting, you just want to
feel better.
To take back control of your life, stay hopeful. Keep moving
forward. Life can be enjoyed and lived well. Start with these basic
steps:
You are your first priority. Many people feel guilty doing this,
but its selfish not to. The better you feel, the better you are
able to be with those around you. So ask yourself, what makes me
feel better, happier, and more content with my life? Then make sure
to schedule time for what you need every day. Quiet time is a must,
whether its through meditation, prayer, taking a walk or reading.
Sometimes it seems that everything desirable is out of reach. Think
of activities you might be able to manage, even on your worst days.
Is it a bubble bath, looking at magazines, getting a massage?
There
is something for everyone everyday. Take care of your emotional
needs, too. Validate yourself and surround yourself with positive,
supportive people as much as possible.
Accept where you are right now and whatever feelings you may
have. Do not fight against your situation or your feelings. This
will only hinder your recovery. Accepting things as they are brings
feelings of peace. Identify where you are in this moment and how it
feels. Just as someone on a diet needs to know his or her starting
point, its important to pay attention to your starting point each
day.
Set reachable, realistic goals. Focus on what you can do now and
celebrate every small accomplishment. Pace yourself! Resist the
temptation to overdo on a good day. That can start a downward pain
cycle. By pacing yourself, you will gradually increase your good
days and begin to feel more normal. Youll start to develop
stability.
Dont minimize your achievements. Feel proud of whatever you can
do and dont compare yourself to anyone else. Many times, just
making it through the day is a big accomplishment. Give yourself a
pat on the back. Encourage and congratulate yourself like you would
a best friend.
Use positive self-talk frequently throughout your day. Are you
criticizing yourself in your mind? Replace these thoughts with
encour-agement and kindness. Tell yourself what a good job you are
doing. Dont hold back. Your emotional well-being and state of mind
have a profound impact on your energy and pain. Lift yourself
up.
Think through what is really important. Focus on what makes
you feel better. If you are involved in activities or situations
that make you feel worse, try to avoid them. If you cant stop right
away, work to limit your involvement and make a plan to stop. You
are your own best advocate.
Be empowered. This is your life. Talk to your doctors and other
health professionals about your goals. Write out questions and get
information. Keep a file on yourself. Ask for help from others when
needed. Join organizations to advocate with others. Face your
fears. Stay open to all possibilities, but trust your own judgment.
Do what you feel is best for you.
Most importantly, LOVE YOURSELF to help heal. Decide what is
right and good for you. Replenish before giving. Take
responsibility for meeting your own needs, emotionally, physically
and spiritually. Do not feel guilty for needing different things
than other people. What may seem like pampering may be what is
needed to feel your best. If others dont understand that is their
issue, not yours.
Just implementing one or two of these steps consistently can
have a positive, profound effect on decreasing your pain and
increasing your energy. Believe your health and your life can be
better. It doesnt happen overnight, but if you take good care of
yourself and practice these positive steps, it will make a
difference. Your pain is real. How you live with your pain is
something you have control over. Start small. Dont worry about your
progress or speed, just keep moving in the right direction. A life
with chronic pain can be a life enjoyed and lived well. It starts
with one step. You are not alone.
HOW TO LIVE WELL WITH CHRONIC PAIN:STEPS YOU CAN TAKE TODAYBY
REBECCA RENGO-KOCHER, MA, MSW, LCSW, ACSW
Lift yourself up.
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L O O S E CONNECTIONS
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SofianEdwin SokoloffMac SolomonStephen & Carol SolotoffMarilyn
SonnetAnna Marie SpainDavid SpechtPhyllis SpectorJ.G. & Lucy
SpezzanoMarlene SpignerDavid & Deborah SprecherKyla
StaffordJean StanleyState of WashingtonKarla StegerScott & Pam
StewartW. Richard & Mollie StoneCarol & Darrel
StrickbergerPaul & June StrueberSupreme Court of New
Jersey Clerks OfficeLaura SutliffJoyce SwansonKarly
TaplinRochelle TaroffCynthia TeboKathryn TenEyckTustin & Donna
TestaThe Blanchard FoundationThe Mitre CorporationThe Pampered
ChefGrady ThomasRaymond & Mary Thomas
Linda TodoroffFilomena TrainaRoger & Elaine TrericeAnn
TrevisaniSarah Agnes TrzeciakJulie TurzinskiJudy UmbeerUnited
WayUnited Way of the Bay AreaUnited Way of the
National Capital AreaUnited Way Special
DistributionRita ValdesVincent ValdesJune ValliereChristine Van
WinkleJaynee & Michael VecchiaVemco Inc.Susan VivianDina
VouvalisW. Olson & C. OlsonStuart WaldmanJanice WalkerJeanette
WallnerTom WaltonStephanie WarnerVirginia WarrenWarren-Newport
Public LibraryChristopher WatsonNed WeinshenkerBen
WeinsteinWelsh Valley Home &
School AssociationSteven WelzerScott WhartonGerry WhitneyRebecca
WidmerRobert & Patricia WietzelJohn WilhelmElla WilliamsEvelyn
WilliamsRita WilliamsBarbara WillisPamela WilsonIrvin WinikKimberly
WisnerMo WittMary Ann WlockCathy WoodlandJ. Alan & Grace
WoodruffConnoe & Allison WortleySara WraggeJacquelyn
WrightYellowstone Traditions Inc.Leonard & Adella YorkRobert
& Ruth ZacherMary ZalewskiTracy ZanderDebra ZecharTed
ZiemerMary & Anthony Zona
1 7
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L O O S E CONNECTIONS
onos, emoas &bute1 8
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onos, emoas &buteL O O S E CONNECTIONS 1 9
Tribute to EDSers Everywhere
To our incredible extended EDS family,Over the last five years
or so, it has been one of the most blessed experiences in my
lifetime to have discovered you and you me, my brothers, my
sisters, and more often than not, my now close and dear friends.
With sincere gratitude to you all I share with you these, my
wishes, and my love, Mags.
Thank you all for the stories you have told, for the energy you
have shared, and for the pennies you have rolled,
For the materials you have published, and for the interviews
youve given,
For the condolences youve sent, and for the articles youve
written,
For the influence youll have in spreading the word far and wide,
for never backing down, and nevermore to hide,
For speaking your mind and opening your heart, for sharing your
thoughts, and for selling your art,
For your patience with newbies sharing information and tips, and
for traveling far despite not enjoying the trip.
For all this and more because life does go on, I wish you
infinite blessings and a battle well have won.
One day, and soon, may we no longer suffer but until then we all
shall rely on each other.
o ar our ankfulne o
rad & arar oma
app 62d Weddin nniversarapp 90 irda, arar
app 85 irda, radnd expres my undyin ratitude or my
dad who tauht me an do anythin, and or my om who tauht me an
also say i
With loarare n oma oot
racerardin
Our eaderOur ero
e couldnt do i without ou!
oe,ani & erri, an ieo
Thanks, mom,for always standing by me with love and
unfailing compassion. Angel
In honor ofPeter H. Byers, M.D.
From Carol Strickberger
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L O O S E CONNECTIONS
onos, emoas &bute
I want to thank those who help mein so many wonderful ways:
Grace Berardini, Claire Blanca, Cynthia Colabella,Michele
Darwin, Ross Entredicho, Mags Foote,
Michele Hegler, Debbie Ignacio, Sue Jenkins, Olivia Kennett,E.
Lisa Makhoul, Mark Martino, Charlotte Mecum, Linda Neumann-Potash,
Ellen Smith, Lani Wilson
and all who have taken the extra step by authoring articles to
make Loose Connections an exciting and growing publication.
2 0
iarou are everything I know about love and everything I love
about life. Thank you for your amazing support of me as I deal with
EDS, and for your support of EDNF, making a difference for us
all.
arar lo ou!
Cynthia ColabellaThank you for your dedication to increasing
awareness of EDS and
establishing networks between EDNF and other
organizations.(Group Leader, Central Florida Group; was awarded
Scholarship for 2007 Advocates Extraordinaire
Advocacy & Leadership Training from Patient Alliance for
Neuroendocrineimmune Disorders Organization for Research &
Advocacy; represented EDNF at three professional conferences during
2007)
Accolades to the Medical ProfessionTo Dr. Nazli McDonnell and
all those who have taken the time and made the effort to educate
themselves about Ehlers-Danlos syndrome and for better serving us;
and to EDNF for providing the materials to teach those who have not
yet Seen the Zebra.
ribu arar odener, .. Your keen intelligence and skill shine for
all who read Loose Connections and The Hinge.Your warmth and
concern touch all who know you and trust in you.Your life time of
achievements inspires all with EDS.Your leadership helps all in the
EDS community.Your courage to face each day inspires all of us.You
are all I ever dreamed of and more.
oic
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L O O S E CONNECTIONSWINTER 2007 PAGE TWENTY-ONE
THIS IS WHATS IMPORTANTBY MARK C. MARTINO
When a person with EDS reports pain, even if out of proportion
to physical findings, they should be listened to and believed.
in my opinion, that is the most important single sentence in the
new Pain Management Medical Resource Guide for health care
profes-sionals to understand. It also represents a personal
evolution of sorts that Id like to share, as I discovered that
writing about pain can be nearly as difficult as living with pain
every day.
The MRGs are in a marketing tool; their purpose is to help
increase awareness of EDS and the resources of the EDNF website
among the medical professional community. Success is getting these
brochures into the right hands and success is having it opened. Ive
seen it happen: I give an Ehlers-Danlos MRG to a doctor or nurse,
and they dont just put it away, they open it, look through it while
theyre talking with me. Its happened every time Ive tried, and its
a great feeling knowing theyll remember more about EDS and
EDNF.
That would have been success enough to make me happy with the
outcome. But the MRGs are also holding far more information than I
thought possible when I started out. Partly this is due to intense
research, mostly it is due to help from incredibly generous
doctors. They have helped the MRGs become far more inherently
useful than initially intended; it surprised me to receive
committed and caring advice.
Still, the MRGs are not, and cant be, diagnostic tools or
scientific papers of very much substance; it would be irresponsible
for EDNF to produce a brochure designed to do anything more than
highlight the knowledge available, but more than that is too much
to expect from a brochure. These are not planned to be a substitute
for thoughtful medical intervention, but to let practitioners know
there is so much more information available.
The MRGs are a voice for EDS information in the language of
medical professionals, welcoming them with an understanding of what
they need and want to know about EDS and how to treat it. The MRGs
strive to reach every doctor, nurse and technician into whose hands
EDSers place themselves day-to-day. We want to encourage an interns
interest and a researcher to look deeper into the growing body of
knowledge about EDS. So it is important that I not be the voice of
a patient with EDS when I work on the MRGs, and that I edit out the
almost inevitable traces of sympathy-begging or demands for
understanding, and present facts. Just the facts.
But eliminating my own patient prejudices was harder than I
expected. The more I learned about pain, the more I found I had to
take my own pain seriously The more I tried to present for doctors
the damage chronic pain can cause, the more important it seemed to
somehow take a stand, to make clear that EDS can cause pain. My
journey with this MRG became compressed into that one stark
sentence: When a person with EDS reports pain, even if out of
proportion to physical findings, they should be listened to and
believed.
Along the way, I was delighted to find myself learning entirely
new ways of thinking: what fuzzy logic can teach about the effects
of EDS as a control on the normal healing process of pain, and when
that healing short-circuits into chronic pain; or how pain is still
an entirely subjective experience that can be described but not
really quantified objectively.
There were things I learned about my own responsibility as a
patient, too. These also had no place in an MRG, either, but became
worthwhile lessons. One is to listen to what my doctors
say, not what I want to hear. Another is to realize there has to
be a long-term perspective: I will be living in pain the rest of my
life, and the more of it I can manage in as many different ways as
possible, the happier Ill be. No, my pain is not my fault; its not
my doctors fault, either which is far easier to remember when
dealing with doctors who obviously care, like the advisory panel,
than it is in hour five of an emergency room wait.
Working on the MRGs is privilege enough, but Ive gained a lot in
return. As I learned the details about pain and came to terms with
what I face, I learned compassion for what my mother had gone
through the last twenty years of her life. I discovered some
strength she, and her mother, had given me, a gift that may even
have been the result of their undiagnosed EDS. As my 51st birthday
passed this week, I rediscovered her last written words:
Whenever you do something to stretch your mind, or exercise your
intellect, Ill be with you.
Whenever you appreciate or engineer color, space, form, Ill be
with you.
Whenever you hug somebody, or touch with hand or eye, Ill be
with you.
This is whats important.
EDNF had only intended to mail the first, main Ehlers-Danlos MRG
with Loose Connections. It is because our CEO asked Purdue Pharma
L.P. that the Pain Management MRG is printed, and also being
distributed to our members. The MRGs have not been intended to be
patient-only brochures; this is another one in our series. Im
thankful to Purdue for the chance to get it written and distributed
quickly, but a little apprehensive; although the goal is to build
awareness, many of the previous
(continued on next page)
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L O O S E CONNECTIONSPAGE TWENTY-TWO WINTER 2007
ALABAMAAlabama Group* Kelly Tinnon, President,
[email protected], 256-399-4068
ARIzONAEDNF Action Association of AZ Vicky Halleck, Organizer,
[email protected], 928-830-0011Phoenix Metro Group* Jennifer
Scherr, President, [email protected], 623-925-8708
CALIFORNIAEDS Advocates of Northern CA* Maggie Buckley, Pres.,
[email protected], 925-946-0384Group of Greater San Diego*
Grace Berardini, President, [email protected], 760-599-9478Online
Information Group* Liza Sauls, President, [email protected],
909-944-6778San Fernando Valley Branch* - Shari Gamson, President,
[email protected], 818-757-7355
CONNECTICUTCT EDS Support & Awareness Group Tara Lopes,
Orgnz., [email protected], 860-749-6003Western CT EDS
Support Group* Sandra Buscher, Pres., [email protected],
203-798-9401
FLORIDACentral Florida Crackers Group Cynthia Colabella, Pres.,
[email protected], 352-735-1853Emerald Coast Group* Sue
Jenkins, President, [email protected], 850-729-2882South
Florida EDS Group Linda Simmons, Organizer,
[email protected], 954-434-1792
GEORGIAAtlanta Area Support Group* Renee Hutchings, Pres.,
[email protected], 404-610-0041
INDIANAMichiana Branch* Pam Malenfant, President,
[email protected], 269-429-8110
KANSASMid Kansas Connection Nathifa Love, Organizer.,
[email protected], 316-944-7520
MARYLANDBaltimore Metropolitan Branch* Margaret Foote,
[email protected], 703-683-9637DC Metro Charter*
Sheri Collins, President, [email protected], 301-570-5718
MASSAChUSETTSEastern MA EDS Group Rachel Donlan, President,
[email protected], 781-848-1341
MIChIGANAnn Arbor EDNF Group* Katie Kerschbaum, President,
[email protected], 734-741-5288
MINNESOTATwin Cities EDS Support Group Erica Sonnier, Organizer,
[email protected], 651-458-4165
MISSOURISt. Louis Connection Group* Stephen Bell, President,
[email protected], 314-322-1214
NEBRASKANebraska Group* Linda Neumann-Potash, President,
[email protected], 402-934-5908
NEW JERSEYNorth Central NJ Group* Lisa Schoenberg, President,
[email protected], 732-566-1218
NEW MExICONM Connects EDNF Group* Angel Denardi, President,
[email protected], 505-690-1690
NEW YORKNew York City Group* Jacqueline Cox, President,
[email protected], 212-987-9821Thousand Island NY EDS Group Jo Ann
Reff, President, [email protected], 315-639-3218Western New
York Branch* Dawn DeWein, Co-President, [email protected],
716-688-8291 Lynda Pixley, Co-President, [email protected],
716-791-3049
NORTh CAROLINAPiedmont Triad Branch* Angie Smith, President,
[email protected], 336-694-9553
OREGONPacific Northwest Group Susan Burkett, President,
[email protected], 503-234-7289
RhODE ISLANDSouthern New England Connections* Karen Ferris,
President, [email protected], 401-683-2680
TExASDallas-Fort Worth EDS Group* Julie Bentler, President,
[email protected], 469-964-0859Greater Austin EDS Group Wilma
Steenbergen, Pres., [email protected], 512-401-9710Greater
Houston Branch* Michele Hegler, President,
[email protected], 281-486-5521San Antonio EDS Group*
Irene Pierce, President, [email protected], 210-392-3880
VIRGINIANorthern Virginia Group* Margaret Foote, Pres.,
[email protected], 703-683-9637Richmond &
Central Virginia Group* Diana Harris, Pres.,
[email protected], 804-272-6701
*Chartered Groups
LOCAL GROUP LISTINGS
Funded by this years Triple It! campaign, our Raising Awareness
Kit will
be offered free to any health care professional until March 1,
2008.
This jam-packed kit will include the EDS All Types CD-ROM, the
General Awareness
brochure, our EDS Medical Resource Guide, a wallet card and the
most current issue of Loose Connections.
Kits will be mailed to any health care profes-sional by EDNF on
request (we do reserve the
right to limit quantities); e-mail [email protected]. Please pass
this newsletter on to medical
professionals and help us build awareness throughout the medical
community.
MRGs didnt make it to the doctors, nurses, therapists and
clinics they stayed with our members. We need to share these. Dont
keep them, give them out.
So please, open the Pain Management MRG, and while youre reading
it, think of the doctors and volunteers who cared enough to work
hard on it, and remember there are people in the world who do want
to help. Then pass the MRG on to a doctor, nurse, someone who needs
to know it. You can share my joy: watch them open it, and know that
youve changed someone a little by connecting EDS to chronic pain in
their minds, maybe for the first time. Youve just made it a little
easier for the next EDSer they meet; thank you.
FOR THOSE OF YOU WHO MADE IT TO THE END: download
http://www.ednf.org/images/stories/MRG_Research/mrgpainresearch.pdf
it contains hyperlinks to much of the research used, as well as
information that didnt fit. Enjoy. Ed.
(continued from previous page)
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GENDER
EDNF 2008MEMBERSHIP FORM
THREE WAYS TO BECOME A MEMBER!You can become a member online at
ednf.org or by mailing or faxing this form to our oce as provided
below. Questions? Call us at 213-368-3800.
*Are you joining for your child? Please provide their
information here. If you have more children, please list on a
separate sheet.
Please provide a login name and password for online access to
the members area of ednf.org. Password must be between 4 and 9
characters, letters and numbers only. This table is good for one
EDNF account. Please print clearly.
NAME GENDER AGE DATE OF BIRTH
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Terms and Conditions:
Access level is a reduced cost membership with access to the
member section of the website including one (1) EDNF login name and
password. Access members will not receive mailings. Access members
can download Loose Connections from the website.
Standard members will receive one (1) EDNF login name and
password allowing complete access to the EDNF member area of the
website. Standard members will have Loose Connections mailed to
them.
Supporting members are eligible to receive two (2) EDNF login
names. Please complete an application for each login name.
Supporting members will have Loose Connections mailed to them.
All first time members receive a new member packet. Renewal
members will not receive a packet.
If you have questions or need assistance with your login name
and password, please feel free to contact us at
[email protected] or call us at 213.368.3800.
EDNF does not lend, sell or trade our membership list to any
individual or organization.
If you are interested in corresponding with other EDNF Families
please sign below to accept the release of your contact information
to those Families only:
Signature:
EDNF now oers members the convenience of subscription
membership. By checking the monthly box, your credit card will be
debited that amount on the rst of every month. Membership can still
be purchased as an annual payment. Please check either annual OR
monthly. Do NOT check both. Your membership will continue until you
choose to cancel. Please see www.ednf.org for more information.
MEMBERSHIP TYPE MONTHLY AMOUNT YEARLY AMOUNT TOTAL
STANDARD
SUPPORTING
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ACCESS
$ 2.50
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n/a
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Either mail this completed form with payment to:
Ehlers-Danlos National Foundation 3200 Wilshire Boulevard Suite
1601, South Tower Los Angeles, CA 90010
Or fax this completed form to EDNF at 213-427-0057.
METHOD OF PAYMENTNote: All payments must be made in U.S.
Currency drawn on a U.S. bank.
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www.ednf.org
WINTER 2007L O O S E CONNECTIONS
Come to the2008 EDS LEARNING CONFERENCEJuly 31August 2 in
Houston, TexasAND
Give someone a registration fee for the holidays and well
provide a special gift card!And you dont have to fight those
frantic buyers
Just e-mail Judy Sobel [email protected] $200 until
December 31, 2007.
THIS EDITION OF LOOSE CONNECTIONS IS COPYRIGHT 2007 BY
EHLERS-DANLOS NATIONAL FOUNDATION. ZEBRA image on page 10 2007
EDNF. PHOTOGRAPHY FROM iPHOTO CREDITS: COVER Tree and Snow 2007
Maurice van der Velden; PAGE HEADER Bare Branches 2007 Sergei
Sverdelov; PAGE NO. HEADER and ABOVE 2007 Rick Hyman; PAGE 7 Ice
Branches 2005 retinal_experiments.