Loose Connections, Winter 2007

DECEMBER 2007 “You can’t light a spark if you don’t first carry a flame…we are all heroes and friends.”

L O O S E CONNECTIONS

Melissa Etheridge

TABLE OF CONTENTS WINTER 2007 FEATURES Why Does EDS Matter?.......8 This is What’s Important...21

MEDICAL Ask the Doctor.....................6 How to Live Well with Chronic Pain.......................15

CONFERENCE Special Section............. 11-14

DONORS 2007 Donors, Memorials and Tributes................. 16-20

COVER: THE VERY FIRST LOOSE CONNECTIONS IN 1986 PAGE 11: 2008 CONFERENCE SECTION PAGE 16: DONORS, MEMORIALS & TRIBUTES INSIDE: PAIN MANAGEMENT M.R.G.

MEMBERSHIP & NEWS EDNF 2008 Theme..............2 “Triple It!”............................3 EDNF News..................... 3-7 Sabal Fdn., San Diego...... 8-9 Kids & Teens......................14 Board of Directors................2 Submissions Guidelines.......3 Membership Form..............23

www.ednf.org

L O O S E CONNECTIONS PAGE TWO • WINTER 2007

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

EDNF ANNOUNCES 2008 THEME

BY BARBARA GOLDENHERSH, PhD

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or 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)

L O O S E CONNECTIONS WINTER 2007 • PAGE THREE

TURN $25 INTO $75 EDNF 2007 “TRIPLE IT!” HIGHLIGHTS

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hlers-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 year’s outstanding results.

Visit

www.firstgiving.com/tripleEDNF to 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 $300…up 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 can’t 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 you’ve helped get out the word about what it’s really like to live every day with EDS. ■■■

• New Office Manager • First anniversary of The Hinge • Started quarterly PAN Hinge • Added six new members to PAN • Taxicab tops, San Diego • ABC special • Produced and shipped EDS MRG • Dental MRG • Acquired Purdue Pharma grant to produce Pain Management MRG • Introduction of EDNF Kids and Teens program/newsletter: Carepages, Volunteer Service of America program • Reorganization of the website, expansion of boards and medical articles, glossary • Human Race, Marin County, CA • Human Race, Greensboro, NC • Sunburst 1000, Michigan • Planning 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 Meeting • American College of Hematology • American Osteopathic Association, National Meeting • Chronic Fatigue Association, PANDORA • Coalition of Skins Diseases, Development Day • Dermatological Nurses Association, Annual Meeting • Immune Deficiency Foundation, National Conference • Internal Medicine/American College of Physicians • Society for Investigative Dermatology • US Psychiatric Congress

GUIDELINES FOR SUBMISSIONS TO LOOSE CONNECTIONS 1. 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 editor@ednf.org that also tells us how to reach you for more information.

2. For photographs, attach them to an e-mail to editor@ednf. org; 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 performed by the camera when it was taken. In the e-mail, please identify the event or cause for the photographs, including any relevant identification (persons involved, date, photographer’s name if needed) and how to reach you for more information.

3. 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 FEATURES ON DUE SPRING ’08

MAR 14

SUMMER ’08 FALL ’08 WINTER ’08

COLUMNS DUE

JAN 25

FEB 15

JUNE 22

MAY 11

MAY 25

SEP 8

JULY 18

AUG 15

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. EhlersDanlos 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.

L O O S E CONNECTIONS PAGE FOUR • WINTER 2007

THE WAY FORWARD

BY CYNTHIA LAUREN, CEO

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lthough I write this the week before Thanksgiving, you will read it in December… and we will be looking at 2008. Doesn’t 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

Each of you has the power to make today and tomorrow better for yourselves, and so much better for those who follow. 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 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. Don’t 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 The path is clear and the everyone who must walk the path opportunities to continue this of EDS. ■■■ growth and improvement are within our grasp. It is the collective voice of EDNF that the healthcare “The greatest use communities, the donors and of life is to spend funders and your communities h e a r; y o u r m e m b e r s h i p i s it for something important for more than access to the website, it tells the world that will outlast it.” you care enough to unify and William James demand the changes you need and (1842 -1910) deserve.

L O O S E CONNECTIONS WINTER 2007 • PAGE FIVE

CHARLOTTE’S FAREWELL

AS DIRECTOR OF LOCAL GROUPS

BY CHARLOTTE MECUM

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s 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 EhlersDanlos 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

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. ■ ■ ■

BOARD OF DIRECTORS CHANGES FOR 2008

BY ROBIN COPPI, RN, BSN CCRN, IMMEDIATE PAST CHAIR OF THE BOARD OF DIRECTORS

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ecember 31st will mark develop programs that may not have the end of terms for board otherwise been realized. members Dave Specht and Richard Blouse.

The Board of Directors and EDNF would like to thank Dave for his willingness Mr. Specht joined the Board of Directors to serve, guidance, and support for the in the summer of 2001 and served as Foundation as it continues to achieve a Director at Large, Vice Chair and its goals and vision.

Chairman of the Board 2006-2007.

Thanks go to Richard Blouse as well for Mr. Specht brought to the Board of his service on the Board of Directors.

Directors years of business experience and added a new perspective to both the Mr. Blouse brought to the board his board and the Foundation as a whole. experience of 35 years in organizational He was able to guide the Foundation management and offered multiple through changes that lead the organi- resources to both the board and the zation to one which reflects a business staff of EDNF. Dick joined the board and corporate structure. The Jordan in 2005 as a Director at Large. The Specht Memorial Golf Tournament and following year Blouse served as the efforts of the Specht family have Treasurer and Chair of the Finance provided significant financial support to Committee, assisting with the financial the Foundation and allowed EDNF the aspects of EDNF. opportunity to continue its work and

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 PAGE SIX • WINTER 2007

ASK THE DOCTOR

The “Ask the Doctor” series continues to seek answers to our member’s 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 of joint 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 day’s rest in between exercise days.

There is a PowerPoint presentation 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 modification 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 CONNECTIONS WINTER 2007 • PAGE SEVEN

EDNF TEAMS WITH BEYOND BIPOLAR

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n 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.

“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 EDNF’s presence at this Conference was success. Many attendees stopped at the booth because they were looking for resources, or to learn what EhlersDanlos Syndrome is. Hundreds of physicians and individuals were educated about EDS and were It also helped that Cynthia, who introduced to our Foundation. lives in the area, was willing to staff the exhibit booth, thus eliminating From her experience representing the cost of lodging and travel.

EDNF at this conference and at others before, Cynthia offers some The first task was to make the pointers to other local groups that booth eye appealing for all. Cynthia might want to provide a similar decorated the EDNF portion of the service at a conference: booth with white and black zebra fabric, EDNF Tee Shirts and a • Save money by teaming up stuffed zebra. Dr. Mountain’s book on booth rental with another covers delineated her half. organization or exhibitor.

• Be aware of possible costs EDS is truly a zebra to conference like table and chair rental and clinicians who are looking for the 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. ■ ■ ■

L O O S E CONNECTIONS PAGE EIGHT • WINTER 2007

SABAL FOUNDATION’S

SIXTH ANNUAL EDNF FUNDRAISER

BY JEANNE KINGSBURY

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ach 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 Sabal’s 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 EDNF ’s 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.

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. ■ ■ ■

L O O S E CONNECTIONS WINTER 2007 • PAGE NINE

LOCAL GROUP OF GREATER SAN DIEGO

AT AMERICAN OSTEOPATHIC ASSN. CONFERENCE

BY LANI WILSON

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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 DO’s 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 The physicians were given the our youngest local group member, 18opportunity to receive three CMEs month-old Chloe. by visiting each exhibitor’s booth and getting a sheet signed. This gave us a The physicians were very happy wonderful opportunity to reach many to receive the new MRGs and the more doctors than we normally would Facts brochure. Some told us they have. The first day was non-stop and were not aware of the EDNF web we quickly adopted Terri’s opening site and didn’t know Ehlers-Danlos line “Are you familiar with EDS?” had its own Foundation. They were race 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 nonprofit among the AOA booths, which included hospital recruiters and pharmacy reps. All types of physicians attended, including dermatologists, emergency physicians, psychiatrists, neurologists, pathologists, pediatricians, rheumatologists, pain management, schlerotherapy and sports medicine. Students, interns, residents and interns were also there.

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.

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L O O S E CONNECTIONS PAGE TEN • WINTER 2007

WHY DOES E.D.S. MATTER?

BY CYNTHIA LAUREN, CEO

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uring 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 don’t 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 aren’t 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 treat. No, they may not be expecting around us, we make it tangible and you, but you can anticipate what meaningful to those around us. they will need to understand. Be prepared before you go; expect to It is up to you to make EDS matter. be the unexpected and know how to This is your life, the lives of your answer their questions. Help them family; no one can do this for you. help you, and you help everyone.

There is no magic, there is no white knight, there is no one who cares You must be a community of more than you, and no one to whom EDSers, not divided according it matters more. Make awareness to type and competing with each happen. other for who is most worthy, who is most needful. You are all worthy All it takes is one little thing; of compassion, understanding and whenever you can, take one step healing, we need to make progress outside yourself to reach someone together. When you are separate else. That one little thing makes and possessive, your voice is weak EDS real and important because and the urgency of EDS education is that someone met you. Speak out. lost. You share a common disorder Share the strength of your story and and a common desire. struggle.

EDNF is to be shared among Instead of keeping Loose Connections all who care and want change. in a drawer, share it with someone While the Foundation can provide else. Don’t save the MRG or give it structure for this cause, while we to your doctor who already knows can educate, provide information you, give it to someone new at that on treatment and research, it is clinic, at that office, at that practice. each of you who make EDS matter.

Forward The Hinge to your clinic and You have the ability to make your school nurse, leave a sports poster world a bit better, not just for you for the P.E. instructors and coaches. but for everyone else after you.

Carry brochures with you and drop You have the power to strengthen them in waiting rooms. When yourself — and EDNF — simply by you visit a hospital or medical spreading the word. office, leave something behind — a General Brochure, an MRG. When Awareness cannot, and will not, you’re sent to a new lab, don’t go happen without each of you. Make empty-handed. awareness happen.

■■■ 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

L O O S E CONNECTIONS WINTER 2007 • PAGE ELEVEN

REFLECTING ON

E.D.S. CONFERENCES

BY MICHELE HEGLER, E.D.N.F. CONFERENCE DIRECTOR

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l m o s t ever y day I receive an e-mail or phone call from a distraught person who has chronic connectivetissue problems. Some folks have diagnosed themselves with EDS, but they are looking for validation.

Some have been diagnosed with EDS, but their physician doesn’t know which type. And some have been definitively diagnosed with a specific type of EDS, but their doctor states that he doesn’t know enough about EDS to treat them.

That’s why our Learning 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.

aunt, uncle, cousins — had died from ruptured aneurysms at 13–55 years of age. I was not going to let that happen to me. And I wasn’t 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. That’s where I first learned about beta-blockers, betablockers that I believe extended my life and my children’s lives. I also • You will hear about the latest met numerous friends who were studies and how to get into them. just like me and just as scared.

• You can ask doctors specific questions — without the $200 My life had new meaning and office visit fee. precious hope.

• You will meet the dearest, lifelong friends.

This year when you consider • You might connect with a doctor whether to go to the 2008 who lives in your area.

Conference, July 31–August 2, 2008 • You’ll be helping every future in Houston, Texas, consider the EDS person to have an easier following points: time than you’ve had.

My first EDS Conference was in 1991, in Seattle, Washington.

I was diagnosed with Vascular EDS a year before and went alone • You will receive the latest And there’s no price tag you can put because I didn’t know another updated information about EDS on these benefits. soul who had EDS and no one from experts in the field. could go with me. A slew of family • You will help the physicians learn I hope to see you in Houston! ■ ■ members — mother, grandfather, from REAL EDS patients.

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C O N F E R E N C E

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 12–14 Nursing and Physical Therapy CEUs.

Q: Is the hotel included in the price?

A: Unfortunately, no. In fact, the Conference fee barely pays for

F . A . Q . 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 b84l223@aol.com.

CONTINUED ››

L O O S E CONNECTIONS PAGE TWELVE • WINTER 2007

SPOTLIGHT ON SPEAKERS Although we feel that every speaker at the Conference is an expert in their fields, and one you don’t 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”.

Joseph S. Coselli, MD, FACC, PhD National Marfan Foundation, and in EDNF PAN Member 1997, was awarded the Marfan Award for his outstanding contributions to Dr. Coselli is Chief of the Division the development of Cardiovascular of Cardiothoracic Surgery and a Surgical interventions and care for Professor of Surgery at the Michael people afflicted with connective E. DeBakey Department of Surgery tissue disorders. In 2001, after at the Baylor College of Medicine. presenting a summary of his 15-year He is also the Chief of Adult experience in abdominothoracic Cardiac Surgery at the Texas Heart aneur ysm repairs in Marfan Institute, and is the Associate Chief patients at both the VIII Aortic at the St. Luke’s Episcopal Hospital Surgery Symposium and the Fall in Houston. Having performed Surgical Society meeting, he was more than 2,000 abdominothoracic awarded the Michael E. DeBakey aneurysm repairs, he is interna- Research Excellence award for his tionally acclaimed as the world’s contributions. His ongoing research most successful surgeon in this has provided critical information field. worldwide to medical professionals who operate on patients with friable Dr. Coselli has demonstrated a tissues. commitment to patients with connective tissue disorders, such “To accomplish great things, we as Marfan Syndrome and EDS. He must not only act but also dream, is a long-standing member of the not only plan but also believe.”

Professional Advisory Board of the Anatole France (1844-1924)

2 0 0 8 Q: Will there be childcare?

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 cuttingedge National Institute of Health: projects: “Clinical and Molecular Manifestations of Heritable Disorders of Connective Tissue,” “Cerebrovascular Aneur ysm: 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 EhlersDanlos 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 connectivetissue disorder.

■■■

C O N F E R E N C E Q: What things are needed for the Silent Auction?

F . A . Q . item is clean and ready for sale before shipping. Contact Angel Denardi at nmconnect@yahoo. com for more details.

A: No. This year we have developed a comprehensive A: Homemade items and sports Kids Program (4+) that will memorabilia are great items. have sessions at the same time Special pillows, splints, Q: Can I provide a scholarship as the adults and the teens massage oils, and other new for a loved one? have. Kids and teens have a items to help the EDS person reduced conference fee and will also do quite well. Some groups A: Absolutely! Conference fees make an excellent gift. You can eat with their parents. are making baskets of items order a card from Judy Sobel from their neck of the woods. at jcs123@comcast.net and then Please make certain that your

L O O S E CONNECTIONS WINTER 2007 • PAGE THIRTEEN

am•bas•sa•dor

HOT TOPICS

TOP-NOTCH SPEAKERS We’re gearing up for another fabulous EDNF Learning Conference, July 31–August 2, 2008 at the Renaissance Hotel, in Houston, Texas. You probably thought we couldn’t top the extraordinary 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

Invited Speakers Peter 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)

2 0 0 8

In addition, we have scheduled Social Security representatives and lawyers, service dogs, diet and nutrition, and Total Body Recall Stay-Fit sessions.

C O N F E R E N C E

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

Conference Kids & Teens am•bas•sa•dor

Noun: 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 EDNFKidsandteens@ mac.com or by calling Michele Darwin at (972) 208-2651.

F . A . Q .

credit card info to EDNF, 3200 by the Conference Committee Wilshire Blvd, Ste. 1601, South and the BOD. Tower, Los Angeles, CA 90010 Q: What is the Spirit of Togetherness and designate it as “Conference Challenge (SOTC)?

Donation.”

A: Last year, In order to raise Q: Can my doctor speak at the funds and have friendly Conference? competition between the A: Possibly. We would need a CV groups, we initiated the SOTC. or resume and suggested topic.

The group with the most All speakers must be approved CONTINUED ››

L O O S E CONNECTIONS PAGE FOURTEEN • WINTER 2007

It’s a Great Time!

R

ichard Le Gellienne was quoted as saying, “Stay the course, light a star, change the world where’er 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.

2 0 0 8 ‹‹

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.

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 Triathalon’s and of course educating their own physicians about EhlersDanlos 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!

C O N F E R E N C E

donations won an award. This Q: I know a vendor who might year we will give more prizes. want to rent a booth. Who’s And every group which donates in charge of this? at least $25 will earn a star on A: Gracie Berardini is in charge the prestigious Walk of Fame. of the vendor booths. You can Contact Lisa Schoenberg at Lisa. contact her at gwranch@cox. cherry2sky@gmail.com for more net. This is the best way for details. vendors to get more customers, help the cause and get oodles of publicity.

F . A . Q .

Q: Who is handling sponsors?

A: You can contact Michele Hegler at michele.hegler@sbcglobal.net for more details.

If you have additional questions, address them to Michele Hegler at michele.hegler@sbcglobal.net.

L O O S E CONNECTIONS WINTER 2007 • PAGE FIFTEEN

HOW TO LIVE WELL WITH CHRONIC PAIN: STEPS YOU CAN TAKE TODAY

BY REBECCA RENGO-KOCHER, MA, MSW, LCSW, ACSW

Rebecca Rengo-Kocher, MA, MSW, LCSW, is something for everyone everyday. you feel better. If you are involved ACSW, is a coach, psychotherapist, speaker Take care of your emotional needs, in activities or situations that make and educator with over 25 years of experience. too. Validate yourself and surround you feel worse, try to avoid them. If She is the president of the Missouri Pain yourself with positive, supportive you can’t stop right away, work to Initiative and author of Beyond Chronic people as much as possible. limit your involvement and make a Pain: A get-well guidebook to soothe the plan to stop. You are your own best body, mind and spirit. Rebecca has lived • Accept where you are right now and advocate. with chronic pain for 33 years. whatever feelings you may have.

Do not fight against your situation or t ’s easy to feel overwhelmed your feelings. This will only hinder when you live with chronic pain. your recovery. Accepting things as Every day life can be a struggle that they are brings feelings of peace. • Be empowered. This is your life. seems impossible to overcome. You push Identify where you are in this moment Talk to your doctors and other health yourself with every ounce of energy and how it feels. Just as someone on a professionals about your goals. Write right down to your soul, and it feels like diet needs to know his or her starting out questions and get information. nothing’s there. Simple activities that point, it’s important to pay attention Keep a file on yourself. Ask for others take for granted can be a laborious to your starting point each day. help from others when needed. undertaking, like sitting to watch a child Join organizations to advocate with or grandchild’s little league game, going • Set reachable, realistic goals. others. Face your fears. Stay open to grocery shopping or trying to concentrate Focus on what you can do now and all possibilities, but trust your own during a meeting. celebrate every small accomplishment. judgment. Do what you feel is best Pace yourself! Resist the temptation to for you.

It’s especially frustrating when family, overdo on a good day. That can start friends, even doctors and nurses tell a downward pain cycle. By pacing • Most importantly, LOVE YOURSELF you that you should be feeling better, yourself, you will gradually increase to help heal. Decide what is right and you’re not trying hard enough, you’re your good days and begin to feel good for you. Replenish before giving. addicted to pain pills or that you’re just “more normal.”

You’ll start to develop Take responsibility for meeting your a complainer. Exhausted, depressed and stability. own needs, emotionally, physically hurting, you just want to feel better. and spiritually. Do not feel guilty for • Don’t minimize your achievements. needing different things than other To take back control of your life, stay Feel proud of whatever you can do and people. What may seem like pampering hopeful. Keep moving forward. Life can don’t compare yourself to anyone else. may be what is needed to feel your be enjoyed and lived well. Start with Many times, just making it through best. If others don’t understand that these basic steps: the day is a big accomplishment. Give is their issue, not yours. yourself a pat on the back. Encourage • You are your first priority. Many and congratulate yourself like you Just implementing one or two of these people “feel guilty” doing this, but would a best friend. steps consistently can have a positive, it’s selfish not to. The better you feel, profound effect on decreasing your pain the better you are able to be with • Use positive self-talk frequently and increasing your energy. Believe those around you. So ask yourself, throughout your day.

Are you your health and your life can be better. what makes me feel better, happier, criticizing yourself in your mind?

It doesn’t happen overnight, but if you and more content with my life?

Replace these thoughts with encourtake good care of yourself and practice Then make sure to schedule time agement and kindness.

Tell yourself these positive steps, it will make a for what you need every day. Quiet what a good job you are doing.

Don’t difference. Your pain is real. How you time is a must, whether it’s through hold back.

Your emotional well-being live with your pain is something you meditation, prayer, taking a walk or and state of mind have a profound have control over. Start small. Don’t reading. Sometimes it seems that impact on your energy and pain. Lift worry about your progress or speed, just everything desirable is out of reach. yourself up. keep moving in the right direction. A life Think of activities you might be with chronic pain can be a life enjoyed able to manage, even on your worst days. Is it a bubble bath, looking at • Think through what is really and lived well. It starts with one step. important. Focus on what makes You are not alone.

■■■ magazines, getting a massage? There

I

Lift yourself up.

�ono�s, �emo��a�s &���bute� 16

Listings as of November 16, 2007. Triple It! donors will receive special mention in Spring 2008.

Arlene Abbott Maureen Abernathy Jenine Adams Robin Admana Claire Agee Alabama Group EDNF American Automobile Association America’s Charities Jack & Rena Appel Julia Araya Zoe Ashcraft AT & T United Way Employee Giving Campaign Susan Atkins Charles & Judith Aylward Pamela Badik Donald & Basha Baerman Noah Baerman Geoff Baker Joan Baker-Gerner Diann Bank Barbara Howe Vaccine Group Dennis I. & Sharon S. Bardash Walter & Gloria Barrett Keith & Laura Bartlett Ronnie Bassham David J. & Carol R. Basso Robert Bateson Robert Bayless Stephen Beegle Gary Behler Jerome & Cheryl Benson Grace Berardini Lilly Bereny Susan Berger Carl & Lorraine Bergstrom John E. Bergstrom Berman for Congress Lynn Starling Biddlecome Brock & Suzanne Birdsong Courtney C. Birkel Natalie Birrell Michael & Kimberly Bishop Karen Blackwelder Jeffrey Michale Blilie Fred Blum Moreen Blum Steven Bolef Candyce Bollinger Iris Bonnett Betina Boserup Alice Brady Timothy Brady Stephan & Nancy Braun Elizabeth Ann Bray

Linda Briggs Robert & Juanita Brissey John & Colleen Broderick Audrey Bronowitz Estelle Bronson Carolyn Brown Michelle Brown Christopher & Lisa Browner Robin Burch Susan Burkett Sara Buruschkin Peter Byers, MD Harry & Nancy Byrne A. Richard & Barbara Carlson Daniel & Lu Ann Carlson Tom Carman Erma Carpenter Michele Carra Kathryn Kanter Caruso Center for Volunteer & Nonprofit Leadership L. Dan & Pamela L. Chaney Carole Chapin Talia Chaves Robert & Ann Chesterman Cheryl Chivers Polly A. Cimino Colin Clarke Jeanne Cleveland Diana Clive Cody Glickman Family Rhoda Cohen Sharon Cohen Community Foundation for Southeast Michigan Community Health Charities Jack & Louise Conie Constellation Energy Group Sharon Contini Brian Cook Theresa Cook Nell Coppi Robin & Steve Coppi Robin Coppi Tim Courneya Linda Crase Virginia Crawford Megan Cunningham Virginia Curran Cut Check Writing Services Inc. Mary Daniels Michele Darwin Scott Darwin David & Lynne Moore and Family Marian Davis Shirley Day DC Metro Group Martha de La Soujeole Deacon Charitable Foundation Michael Dean

Angela Denardi Dawn DeWein Russell & Dawn DeWein Ronald J. DiAntonio Gertrude Dickerson Tammy Dickinson James & Karen Diehl Susan Dion James & Janet Dittoe Dittoe Public Relations Jerry Dittrich Karen Dix Adele Dixon Jill Dlott Thomas & Linda Dooney Dave & Julie Draeger Ann Drake Micheller Drengson Gary Dubin Debbie Dubowski John & Dorothy Duncan Mary Ebers EDNF Maillie McCarraher Lennon EDNF San Fernando Valley Branch EDNF WNY Branch EDS Chapter in Doylestown PA EDS Sabal Foundation Ehler-Danlos National Foundation Atlanta Area Group Frank Eisenman Margaret Elf Howard & Helen Ellis William & Faye Ellison Shirley Emmerson David & Karen Evans F. Batchelor F. McDermott F.E. Giddy Abraham Farber Craig & Mary Fellows Seymour Darlene Ferley Angelia Fernandez Dale & Flora Ferrens Fidelity Charitable Gift Fund James & Pamela Fish Jack Fishman Cazzane Marie Fitterer Catherine Floyd Emma & Franz Fogt Margaret Foote Yetta Forman Carol Davis Forshay Cidny Fox John Fragale Patricia Fraley Lee Frank Patricia Franklin Danielle Freeburg Barron Freeburger Kim & Bruce Freedman

L O O S E CONNECTIONS

Gwen Freeman Brooke Friedman Pete & Alice Friedman Funding Factory Troy Funk Larry & Pauline Furman Valentina Gabela Sherman & Shari Gamson Louise W. Gane Elaine Harvey Garcia Cynthia Stephens Gareri Linda Garrett Henry & Mary Garvey Sarah Gearty Anna Geen Bonnie Gelb Bruce & Nancy Gerlach Jessica Giesige Donna Gleason Merille Felchle Glover John & Christina Godar Eileen Godfrey Frances Goerler Lloyd Goin Sherri Gold Jay A. Goldberg Richard & Barbara Goldenhersh Hilton Goldreich Kelly Gonzales Nancy Gordon Theresa Grace GRC Wireless Greater Lowell Community Foundation Norm & Judy Greenberg Jack & K Gregg Karol Gresser Angela Griffin Kate Griffin Doug Grimes Angela Griswold R.J. & M.A. Grossman Marjorie Grube Jesse & Alice Gruber Jill Grumman Carol Guilford Robert Guthrie John & Diane Hackett Paul Hagerman Joanne & James Halpin Martin & Mary Hamilton Meg Hamilton Linda Hamlin Melissa Hanna Kristy Elliot Hansen Will & Kristine Hanson John & Eileen Hart Jacob Hauser Joanne Hays Barbara K. Heinzen Jerry T. Herring D.D.S Joseph Hershfield Kathy Heupler

Charlise Hill-Larson Aaron Hipkins David Hoak Nhan Hoang Carl Wayne Hoffman Barbara Jane Homon Dennis & Mona Houlihan Michael & Cynthia Huempfner Maxine Hull Nicole Hundley Charles & Susan Hurowitz Joanne Hutchings Susan May Hutchinson John & Grace Hutto David Hyman iGive.com Holdings Illinois Tool Works Foundation (Duane Schultz) Kenneth Inchausti Virginia Inman Irish Restoration Association J. James Charlotte Jackson Hugh M. Jackson Janet Jackson Vicki Jacobs William & Joan Jagel Jamie James Joni James Cathy E. Jaster Randy H. Jaster Sue Jenkins Callie Jennings Toni Jobes John Paul II High School Warren & Carol Johnson Jeanne Jones Keith & Pat Jones Julia Brownley for Assembly Junkermier, Clark, Campanella, Stevens, P.C. Lorena Von Kaenel Alan & Jean Kahn Kaiser Permanente Community Giving Campaign Martin & Mary Kane Elise Kaplan Keith & Betsy Kaplan Pat & Natalie Kater Evelyn Kauffman Patrick Kealy Beverly Kelly Louis & Ruth Kessler Seymour & Frances Kessler Key Pharmacy Terri Keyes Diana Killian Justin Kimball Wendy Kimsey Harold & Linda Kindsvater Jeanne Kingsbury

L O O S E CONNECTIONS

Lyn Klein Laura Kleiner Cindy & Gary Kleinschmidt Elizabeth Klerman Mary E. Klupping Martin Knecht Robert Knecht Deborah Harrison Knowlton Amelia Koenig Sheila Kohn Misty Koper Howard Kornhaber Sherry Koven Denise Kruzikas Elizabeth Kupec Neil & Maureen Kurtz Helen Kuzel Susan Kwik Annette Lakes Bob & Carol Lamm Joan Lange David & Barbara LaRoche Joyce Larson Constance Lavallee Michael Lawson Mary Lazalde Lemonade PI Inc. d.b.a.

Flowerpetal.com Robert Lerner Scot LeVan Ophira Levant Levine for Assembly 2006 Glenn & Diane Lichti Warner & Kevin Linquist Margaret Lloyd Local Group of Greater San Diego Keith Lochmueller Anna Lee Locklar Leslie Lowe Suzanne Lowe Michelle Bateson Lown Lawrence & Pearl Loxterman Kenneth MacDougall Elizabeth MacKnight Norra MacReady Elisabeth Makhoul Nancy Malinowski S.J. Mancuso & Mary Mancuso Mark Eisenberg Family Foundation Sara Maroscher Margie Marsted Mark Martino Joseph & Margaret Mary Carol Masana Linda Mast Penny Matthews Adrienne Mayer Angela T. Mazanetz Donna McBrian Donald & Katherie McBride Margaret MaryMcBride

�ono�s, �emo��a�s &���bute�

Eleanor McCann Barbara McCord John & Joan McCormick Sheila McGinley Michele McKee Gregory & Linda McKenna Roberta McKnight Jennifer McLeod Florence & Marjorie McMullen Dr. & Mrs. Joseph Meara Charlotte Mecum Medco Employee Giving Campaign/ Joseph Randazzo Diane Mellon Alison Melson Irene Melzer Memorial Health System Steven & Pam Mermell Merlie & Karen Meyer Patricia Dale Micklus Elwira Miezal Elaine S. Mittell Rhonda Moon Michele Moret Gregory Morgan William & Judith Morgan Patti Moseley Lisa Mullinix Anthony Munroe Patricia Murphy Carol & Louis Myerowitz Esther & Hope Myers Stephen & Charlene Nash National Fuel Gas Supply Diane Neff Marshall Neiman Laurie Nelson Gerard & Patricia Nester Erika Neumann Linda Neuman-Potash New Mexico EDNF Group Geralyn Newell John & Diane Niermeyer Nissan North America, Inc. Vanessa Nnaji Vicki Norris Michelle Novak Sheila O’Brien Alma Ognibene Linda Olvera James Osen Diane Padway Martha Palanzo Barbara Palmer Bobbi Palmer Selena Michele Palmer Selena Palmer William Palmer David Pardoe Veronica Parfitt Steven Park & Anne Park Dawn Parker

17

Kamini Patel Sonal Patel Patient Alliance For Neuroendocrineimmune Mrs. E. & Steve Patterson Nancy Sue Penn Jane Pennygraefen Joan Perrone Kathleen Phalen Ann Phillips Henry & Susan Phillips Elizabeth Picard Piedmont Triad Branch EDNF Virginia Ray Pierce Margaret Pippin Lynda Pixley Play for Your Cause Kathleen Pollack Rachel Pollack Ross Pollack Alice Polomis Nancy Polomis Frank & Ann Pomposelli Debra Premielewski Michael & Debra Premielewski Elizabeth Preston Kathy Prior Nancy K. Pruett Craig & Kathy Pruisner Jane R. Quinn Jeanne Rainoldi Ralph & Virginia Randall Adrienne Ratkiewicz Recreational Equipment Karolyn Regan Leanne Reine Preston Reine Emily Reiser Barry & Helen Remely Sandra Ridgely Mary Ann Rimbocchi James & Kay Rivenes Riverglades Elementary PTA Barbara Robertson Susan Robohm Sandra Rogers Joseph & Carol Romano Julie Ronck Brenda Roop Tammy Roop James & Donna Rooth John & Eugenia Rooth Adam Rosenberg Hilary Ross Marsha A. Ross Nicole Royston Brian Ruoss Judy & Phillip Ruppel Dennis & Elizabeth Russom Angela Rutherford Patricia & Al Sabal Wallace & Arlene Saff

Richard & Mary Sanders Danny Sauer Rick Sauers Donna Scanlon Anne J. Schwoebel Diana Scofield Steve & Joanie Scott Michael & Ann Sears Juliann Secrest Elizabeth Seifert Natalie Serody Donna Seymour-Jensen Edda Shaffer Emily Shaffer Jill-Richard Shayna Scott Sheldon Lane Sherman Kelly Shikany Susan Sicchitano Leo & Eldora Siegel Linda Simmons Gwen Sims Ronnie & Kathy Sink Gregory Sirmans Hartviig & Judith Skauge Jane W. Smith Marty Smith Todd & Mary Smith Diane Smoot Judith Sobel Michele Sobel Helen Sofian Edwin Sokoloff Mac Solomon Stephen & Carol Solotoff Marilyn Sonnet Anna Marie Spain David Specht Phyllis Spector J.G. & Lucy Spezzano Marlene Spigner David & Deborah Sprecher Kyla Stafford Jean Stanley State of Washington Karla Steger Scott & Pam Stewart W. Richard & Mollie Stone Carol & Darrel Strickberger Paul & June Strueber Supreme Court of New Jersey Clerk’s Office Laura Sutliff Joyce Swanson Karly Taplin Rochelle Taroff Cynthia Tebo Kathryn TenEyck Tustin & Donna Testa The Blanchard Foundation The Mitre Corporation The Pampered Chef Grady Thomas Raymond & Mary Thomas

Linda Todoroff Filomena Traina Roger & Elaine Trerice Ann Trevisani Sarah Agnes Trzeciak Julie Turzinski Judy Umbeer United Way United Way of the Bay Area United Way of the National Capital Area United Way Special Distribution Rita Valdes Vincent Valdes June Valliere Christine Van Winkle Jaynee & Michael Vecchia Vemco Inc. Susan Vivian Dina Vouvalis W. Olson & C. Olson Stuart Waldman Janice Walker Jeanette Wallner Tom Walton Stephanie Warner Virginia Warren Warren-Newport Public Library Christopher Watson Ned Weinshenker Ben Weinstein Welsh Valley Home & School Association Steven Welzer Scott Wharton Gerry Whitney Rebecca Widmer Robert & Patricia Wietzel John Wilhelm Ella Williams Evelyn Williams Rita Williams Barbara Willis Pamela Wilson Irvin Winik Kimberly Wisner Mo Witt Mary Ann Wlock Cathy Woodland J. Alan & Grace Woodruff Connoe & Allison Wortley Sara Wragge Jacquelyn Wright Yellowstone Traditions Inc. Leonard & Adella York Robert & Ruth Zacher Mary Zalewski Tracy Zander Debra Zechar Ted Ziemer Mary & Anthony Zona

�ono�s, �emo��a�s &���bute� 18

L O O S E CONNECTIONS

�ono�s, �emo��a�s &���bute�

L O O S E CONNECTIONS

19

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 you’ve given, For the condolences you’ve sent, and for the articles you’ve written, For the influence you’ll 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 we’ll have won.

Thanks, mom, for always standing by me with love and unfailing compassion.

— Angel

One day, and soon, may we no longer suffer – but until then we all shall rely on each other.

�rac� �erardin� Our �eader Our �ero �e couldn’t do i� without �ou! �o�e, �ani & �erri, �an �ie�o

In honor of

Peter H. Byers, M.D.

•

From Carol Strickberger

�o �ar� our �ankfulne� �o�

�rad� & �ar�ar� �oma�

�app� 62�d Weddin� �nniversar� �app� 90� �ir�da�, �ar�ar� �app� 85� �ir�da�, �rad� �nd � expres� my undyin� �ratitude �or my dad who tau�ht me � �an do anythin�, and �or my �om who tau�ht me � �an also say i�…

With lo��

�ar�are� �n� �oma� �oot�

�ono�s, �emo��a�s &���bute� 20

�i�ar�

�ou 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.

� lo�� �ou!

�ar�ar�

Cynthia Colabella

Thank 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 Profession To 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.”

L O O S E CONNECTIONS

I want to thank those who help me in 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.

�ribu� � �ar�ar� �o�den�er�, ��.�.

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.

�o��

�ic�

L O O S E CONNECTIONS WINTER 2007 • PAGE TWENTY-ONE

THIS IS WHAT’S IMPORTANT

BY 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.”

I

n my opinion, that is the most important single sentence in the new Pain Management Medical Resource Guide for health care professionals to understand. It also represents a personal evolution of sorts that I’d 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. I’ve seen it happen: I give an Ehlers-Danlos MRG to a doctor or nurse, and they don’t just put it away, they open it, look through it while they’re talking with me. It’s happened every time I’ve tried, and it’s a great feeling knowing they’ll remember more about EDS and EDNF.

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-today. We want to encourage an intern’s 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 sympathybegging 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.”

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; Along the way, I was delighted to find it surprised me to receive committed myself learning entirely new ways of thinking: what fuzzy logic can teach about and caring advice. the effects of EDS as a control on the Still, the MRGs are not, and can’t be, normal healing process of pain, and when diagnostic tools or scientific papers of very that healing short-circuits into chronic much substance; it would be irresponsible pain; or how pain is still an entirely for EDNF to produce a brochure designed subjective experience that can be described to do anything more than highlight the but not really quantified objectively. knowledge available, but more than that is too much to expect from a brochure. There were things I learned about my These are not planned to be a substitute own responsibility as a patient, too. for thoughtful medical intervention, but These also had no place in an MRG, to let practitioners know there is so much either, but became worthwhile lessons.

One is to listen to what my doctors more information available.

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 I’ll be. No, my pain is not my fault; it’s 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 I’ve 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, I’ll be with you.

“Whenever you appreciate or engineer color, space, form, I’ll be with you.

“Whenever you hug somebody, or touch with hand or eye, I’ll be with you.

“This is what’s 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.

I’m 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)

L O O S E CONNECTIONS PAGE TWENTY-TWO • WINTER 2007

(continued from previous page) MRGs didn’t make it to the doctors, nurses, therapists and clinics — they stayed with our members. We need to share these.

Don’t keep them, give them out.

So please, open the Pain Management MRG, and while you’re 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 you’ve changed someone a little by connecting EDS to chronic pain in their minds, maybe for the first time. You’ve 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 didn’t fit. Enjoy. — Ed.

LOCAL GROUP LISTINGS Alabama Alabama Group* • Kelly Tinnon, President, glueless@comcast.net, 256-399-4068 Arizona EDNF Action Association of AZ • Vicky Halleck, Organizer, ednfvicky@hotmail.com, 928-830-0011 Phoenix Metro Group* • Jennifer Scherr, President, jmgrimse@yahoo.com, 623-925-8708 California EDS Advocates of Northern CA* • Maggie Buckley, Pres., maggie_buckley@yahoo.com, 925-946-0384 Group of Greater San Diego* • Grace Berardini, President, gwranch@cox.net, 760-599-9478 Online Information Group* • Liza Sauls, President, thing1973@aol.com, 909-944-6778 San Fernando Valley Branch* - Shari Gamson, President, sfvbranch.ednf@gmail.com, 818-757-7355 Connecticut CT EDS Support & Awareness Group • Tara Lopes, Orgnz., yoursecretary@sbcglobal.net, 860-749-6003 Western CT EDS Support Group* • Sandra Buscher, Pres., universalm@comcast.net, 203-798-9401 Florida Central Florida Crackers Group • Cynthia Colabella, Pres., zoomzoom@thevillages.net, 352-735-1853 Emerald Coast Group* • Sue Jenkins, President, 1suejenkins@earthlink.net, 850-729-2882 South Florida EDS Group • Linda Simmons, Organizer, southfloridaeds@bellsouth.net, 954-434-1792 Georgia Atlanta Area Support Group* • Renee Hutchings, Pres., hutchingsrenee@hotmail.com, 404-610-0041 Indiana Michiana Branch* • Pam Malenfant, President, info@michianaednf.org, 269-429-8110 Kansas Mid Kansas Connection • Nathifa Love, Organizer., luminations@gmail.com, 316-944-7520 Maryland Baltimore Metropolitan Branch* • Margaret Foote, ednfnorthernvirginia@comcast.net, 703-683-9637 DC Metro Charter* • Sheri Collins, President, ipassoc@comcast.net, 301-570-5718 Massachusetts Eastern MA EDS Group • Rachel Donlan, President, easternmasseds@yahoo.com, 781-848-1341 Michigan Ann Arbor EDNF Group* • Katie Kerschbaum, President, info@a2-ednf.org, 734-741-5288 Minnesota Twin Cities EDS Support Group • Erica Sonnier, Organizer, twincitieseds@gmail.com, 651-458-4165 Missouri St. Louis Connection Group* • Stephen Bell, President, ehlersdanlos@charter.net, 314-322-1214

Funded by this year’s “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 professional by EDNF on request (we do reserve the right to limit quantities); e-mail medinfo@ednf. org. Please pass this newsletter on to medical professionals and help us build awareness throughout the medical community.

Nebraska Nebraska Group* • Linda Neumann-Potash, President, loosejoint@aol.com, 402-934-5908 New Jersey North Central NJ Group* • Lisa Schoenberg, President, lisa.cherry2sky@gmail.com, 732-566-1218 New Mexico NM Connects EDNF Group* • Angel Denardi, President, nmconnect@yahoo.com, 505-690-1690 New York New York City Group* • Jacqueline Cox, President, eds.nyc@gmail.com, 212-987-9821 Thousand Island NY EDS Group • Jo Ann Reff, President, crafty444@hotmail.com, 315-639-3218 Western New York Branch* • Dawn DeWein, Co-President, dmdewein@yahoo.com, 716-688-8291 Lynda Pixley, Co-President, lyndapixley@yahoo.com, 716-791-3049 North Carolina Piedmont Triad Branch* • Angie Smith, President, piedmont_ednf@yahoo.com, 336-694-9553 Oregon Pacific Northwest Group • Susan Burkett, President, sburkett@careerdirectionsnw.com, 503-234-7289 Rhode Island Southern New England Connections* • Karen Ferris, President, karenf30@verizon.net, 401-683-2680 Texas Dallas-Fort Worth EDS Group* • Julie Bentler, President, dfwedsgroup@verizon.net, 469-964-0859 Greater Austin EDS Group • Wilma Steenbergen, Pres., wilmasteenbergen@yahoo.com, 512-401-9710 Greater Houston Branch* • Michele Hegler, President, michele.hegler@sbcglobal.net, 281-486-5521 San Antonio EDS Group* • Irene Pierce, President, gizpie@sbcglobal.net, 210-392-3880 Virginia Northern Virginia Group* • Margaret Foote, Pres., ednfnorthernvirginia@comcast.net, 703-683-9637 Richmond & Central Virginia Group* • Diana Harris, Pres., dianamharris1@comcast.net, 804-272-6701 *Chartered Groups

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www.ednf.org L O O S E CONNECTIONS WINTER 2007

Come to the

2008 EDS LEARNING CONFERENCE

July 31–August 2 in Houston, Texas AND

Give someone a registration fee for the holidays and we’ll provide a special gift card!

And you don’t have to fight those frantic buyers…

Just e-mail Judy Sobel at jcs123@comcast.net.

Only $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.