Loose Connections (May 1996) by Mark Martino

Vol. XI, Number 2 The Official Communications Link Of The Ehlers–Danlos National Foundation 6399 Wilshire Blvd. Suite 510 Los Angeles, California 90048

May, 1996 (310) 277–4900

Ergonomics: Recognition and Evaluation of Risk Factors and Potential Stressors – Part 1 By Meryl B. Brutman, MPH – EDNF Board Member and Founder of Chicagoland Branch. Meryl has EDS type III. This is the first of of aa two–part two–part series series on on the the recognition, evaluation, and and control control of of potential risk factors that that can can lead lead to to increased injury, discomfort, discomfort, and/or and/or fatigue. fatigue. This issue discusses each of the the seven seven potential risk factors so so you you can can recognize recognize them in any situation. situation. ItIt will will also also provide provide guidelines to determine the the severity severity of of the the risk. Part 2, which which will will be be presented presented in in the the next issue of Loose Loose Connections, Connections, will will explore explore the of variety of methods control methods the variety control available to available to reduce or reduce or eliminate theeliminate potential the risk factors potential risk factors introduced here. introduced here. The word Ergonomics comes comes from from the the Greek Greek “ergo” and “nomos” which translated “ergo” and “nomos” which translated means means “work” and of” “study of” orof”. “laws of”. “work” and “study or “laws Thus, Thus, ergonomics is simply the study of ergonomics is simply the study of or lawsorof laws of of the relationship work or work of theorrelationship between between people people and their work environment. The and their work environment. The definition definition used by the Occupational used by the Occupational Safety and Safety Health and Health Administration is more specific: Administration is more specific: “adapting “adapting jobs and workplaces to the jobs and workplaces to the worker by worker by designing tasks, tools, and equipment designing tasks, tools, and equipment that thatwithin are within the worker’s physical are the worker’s physical capabilities capabilities and limitations”. and limitations”. Ergonomics, Ergonomics, however, is however, notthelimited to theItworkplace. It not limitedis to workplace. is a is a multidisciplinary science that includes multidisciplinary science that includes the the fields of medicine, physiology, anatomy, fields of medicine, physiology, anatomy, engineering, psychology, chemistry, chemistry, and and biomechanics just to name aa few. few. So So how how can Ergonomics help people people with with Ehlers– Ehlers– Danlos Syndrome? Many of us have probably probably heard heard the the term term Ergonomics used as an an adjective adjective in in various various TV commercials and print ads. It is especially common when describing cars.

An ergonomically designed interior TV commercials and print ads. It is and ergonomic displays and controls. What these especially common when describing cars. An ads are referring to is analogous to the terms ergonomically designed interior and “perfect fit displays or fits like glove”. Thus, ergonomic anda controls. What these Ergonomics aims to be user friendly byterms ads are referring to is analogous to the designing things that are easy to operate “perfect fit or fits like a glove”. Thus, both mentally andtophysically while also Ergonomics aims be user friendly by requiring the least amount of andboth designing things that are easy energy to operate effort. Ideally, mentally and physically while also requiring objects strength the leastrequiring amount of energy and and precision effort. Ideally, would be designed for the least able objects requiring strength and precision people in society, usually the elderly would be designed for the least able and disabledinpopulations. Unfortunately, as many people society, usually the elderly and of you can attest to, there are far too many disabled populations. Unfortunately, as many heavy doors and poorly designed items of you can attest to, there are far too many currently in use. good news isitems that heavy doors and The poorly designed manufacturers, engineers, designers, currently in use. The good news is thatetc. are much more aware of thesedesigners, issues andetc. areare manufacturers, engineers, starting to incorporate ergonomics into much more aware of these issues and aretheir products.to incorporate ergonomics into their starting products.

Risk Factors and Potential Stressors In order to design or or choose choose ergonomic ergonomic related items, we must must first first understand understand what what potential risk factors and and stressors stressors need need to to be reduced be reduced or avoided or avoided completely. completely. We We mustmust also realize also realize that buying that buying an ergonomic an ergonomic tool does tool not guarantee does not guarantee an ergonomic an ergonomic fit. Many fit. Many items are labeled items are labeled as ergonomically as ergonomically designed, but really fall but designed, shortreally of this falldistinction. short of this Likewise, the tool or item distinction. Likewise, must be thecorrectly tool or item matched must with be correctly the intended matched use with or onethewill intended not benefit use from or onechoosing will not an benefit ergonomic from choosing item and an can even make item ergonomic thingsand worse. can even make things worse.

There are seven major risk risk factors factors or or potential stressors. They are are as as follows: follows: repetitive motions, awkward awkward postures, postures, forceful exertions, mechanical mechanical stress stress (direct pressure on nerves and and soft soft tissues), tissues), vibration, extreme temperatures temperatures (both (both too too low and too high) and and the the use use of of ill ill fitting fitting or poorly chosen gloves. The The more more risk risk factors present, and the more more severe severe each each risk factor, the higher higher the the potential potential for for injury or discomfort. discomfort. The evaluation of of severity severity mentioned mentioned below with each risk factor factor is is just just aa guideline. It is impossible impossible to to exactly exactly predict injuries and to to avoid avoid all all potential potential risk factors. Therefore, your your mission mission (should you decide to accept accept it) it) isis to to reduce as many risk factors factors as as possible possible and and to limit the severity severity of of each each one. one. Even Even when only one severe risk factor factor is is present, the goal the is still as muchit as present, goaltoisreduce still toit reduce as possible financial constraints and much as within possible within financial current knowledge. constraints and current knowledge. A detailed discussion of of possible possible control control measures for each risk factor factor will will be be presented in the next issue issue of of Loose Loose Connections as Part 2 of of this this article. article. The The important thing to remember, remember, is is that that Ergonomics, like Medicine, is is as as much much an an art as a science. You You know know your your bodies bodies the the best, so you need to to consider consider what what feels feels good to you. One One caution caution though: though: some some postures – like slouching –– may may seem seem comfortable at first, but but can can lead lead to to injuries.and discomfort in the long run. injuries

Views expressed herein are only those of the authors, and should not be construed to represent the 1996 EDNF —Foundation Page 1 and it’s elected officials opinions or policies of the August, Ehlers–Danlos National

Continued on page 8.

LOOSE Connections Published Quarterly By

Ehlers–Danlos National Foundation 6399 Wilshire Blvd. Suite 510 Los Angeles, CA 90048 Phone: (213) 651–3038 FAX: (213) 651–1366 e–mail: loosejoint@aol.com

Executive Director Nancy Regas, R.N., M.S., M.F.C.C.

President Gerald Rogowski

Vice President Linda Neumann–Potash, R.N., M.N.

Vice President for Patient Advocacy Susan Stephenson, R.N., B.S.N., C.C.R.N.

Secretary Karen Czerpak, R. N.

Treasurer Harold Goldstein

Board of Directors Rebekah Sheyda, Chair Meryl B. Brutman, M.P.H. Karen Czerpak, R.N. Harold Goldstein Linda Neumann–Potash, R.N., M.N. Nancy Regas, R.N., M.S., M.F.C.C. Gerald Rogowski

The Chair’s Corner Rebekah L. Sheyda Chair, Board of Directors While watching the recent Olympic opening ceremony, I was struck when one of the speakers encouraged all listeners to reach for a “brighter tomorrow.” How exciting that our motto is being broadcast over much of the globe! How appropriate that this was mentioned to thousands of athletes. While many of the events were individual, team competition was also important. And all were concerned with each country’s tally of medals as the games progressed. Remarkable similarities can be drawn between the EDNF and the charge to the Olympic athletes. Each of us is responsible for ourselves, but we are all concerned with the well–being of the Foundation. The thriving local branches can be seen as teams working to excel – both for themselves and the good of all. Win or lose, the Games continued. Relay events constituted an important aspect of the Olympic Games. In these competitions, each successive athlete had to do his or her best. Consider what would have happened if one of the participants dropped out of the race midway through. Regardless of the abilities of the other athletes, the team could not have finished the event, much less have won. The Ehlers–Danlos National Foundation was fortunate to have an incredible woman run the first leg of the relay. Nancy Rogowski not only established the benchmark to which the Foundation must strive, she put the team together, she entered us in the race. She set the pace. Today, over a year has passed since Nancy Rogowski handed off the baton. She finished her leg of the race and we are all most grateful for what she accomplished by establishing the Ehlers–Danlos National Foundation. We are proud to announce that the Ehlers–Danlos Syndrome Database Manager has been named in honor of the Founder of EDNF, Nancy Rogowski. Now, each person who receives this issue of Loose Connections, has an opportunity to actively participate in the race. Please read the enclosed information on page 7 announcing the birth of the Nancy Hanna Rogowski Research Database. We, as a Foundation, are in the middle of the relay, and every person is vital in holding up the baton. It is not always easy, and the track is not always smooth, but we continue. Thank you to the many volunteers who work so hard for the success of all. I encourage you to become active at the local and national levels. It is when we all strive to win that we will reach a brighter tomorrow.

Medical Advisory Board Petros Tsipouras, M.D., Chair Patrick Agnew, D.P.M. Robin Bennett, M.S. William Cole, M.D. Mark Evans, M.D. Richard Wenstrup, M.D.

Medical Consultants Pat Aulicino, M.D. Peter Beighton, M.D., Ph.D. Peter Byers, M.D. Sheldon Pinnell, M.D. F. Michael Pope, M.D. Catherine A. Stolle, Ph.D. Alan Weinberger, M.D.

Editors Meryl B. Brutman, M.P.H. Darlene A. Clarke M.S.N., R.N. Karen Czerpak, R. N. Harold Goldstein Linda Neumann-Potash, R.N., M.N.

— Fund Raiser — — Greeting Cards — The foundation will be selling a box (8 in a box) of Tara Leary’s beautiful greeting cards for $10 plus $1.75 (for shipping and handling). The cards are 5 x 7 in size with a gorgeous water color on the front and blank inside with plenty of space to send good wishes to your friends and family. Each of the boxes contains a 5 x 7 card with information about EDNF and the outside of the box has a sticker with our address. We are hoping the local support groups will embrace this project by purchasing cases (a case has 20 boxes) for their members to sell and purchase themselves. Once you see them, you'll be hooked! Please contact Tara at the following address or phone number to place an order: Tara M. Leary 222 Williamstown Ct. — Newington, CT. 06111 (860) 667–2079 Make checks payable to EDNF.

Editor & Publisher Keith G. Clarke (kclarke@en.com)

August, 1996 EDNF — Page 2

“Coping With EDS”

Shriners Hospital Hosts Tampa Bay Branch,

Patricia Damler RN; President, Chicago Area Branch. Patricia has EDS Type IV

November 1996

Daily issues of life often become complicated. What to do about the following is a full–time job: work, homecare, transportation, medical care with the ongoing appointments, complex insurance, no insurance, shopping, housework, relationships with family and friends and mobility. Many years ago, my mom told my daughter to try to think of something good that went on that day. It seemed to stop her from concentrating on the negatives of her day to an overwhelming degree. She was coping with developmental disabilities. It made life so much easier for both of us when the first comment out of her mouth was not a negative one. Try this with your friends and family. Set aside a time period to get things off your chest, but don’t continually dwell on these issues. Understand that disabled people come in all forms; others may be dealing with issues that we have no awareness of until we listen. Dealing with limitations can often keep people from going through the stages of grief: denial, anger, bargaining, depression and acceptance. A sense of loss of being in control of your own life can be very profound. Talking about your feelings is so important in order to move through the stages. Don’t be afraid to reach out and get involved in a support group or seek professional stress management. Not only will you help yourself, but you may even become a support to someone you have never met before.

will e W r. . . t e r d a y e h t To g e a b r i g h f ind

EDS Learning Day The Tampa Bay Chapter and Shriners Hospital–Tampa Bay unit are working together to bring current information, education, and support to patients, families , friends and health care professionals in Florida. In addition to offering chapter support and hospitality since our beginning in October 1995, the hospital has provided treatment to many patients with EDS for orthopaedic related symptoms such as scoliosis, joint dislocations and instability. In a continued effort to bring patients with EDS and health care professionals together, an EDS Learning Day is being planned at Shriners Hospital for a weekend in early November. It is our hope that patients and health care professionals from Florida, as well as other states, will take advantage of this unique learning opportunity. Current plans include a family social on Friday evening, clinics for patient and physician interactions on Saturday and brunch followed by informational sessions on EDS. Reduced lodging will be available to those wishing to stay over and enjoy the area’s attractions on Sunday. As plans are finalized, more information will be available. If this event is well attended, it may become an annual event or a model for regional learning days hosted by other branches. The Tampa Bay Branch is grateful to Shriners Hospital for its interest, support and involvement with patients who have Ehlers– Danlos Syndrome. Ashley, daughter of chapter president, Peggy Snuggs, has experienced first hand, the excellent medical care that the hospital provides. It was after Ashley’s spinal fusion at this hospital, that the idea for a local branch and support group began. Since that time, three meetings have been held at the facility bringing together over 60 members. For more information about the Learning Day or the Tamp Bay Branch, contact:

Peggy Snuggs (813) 949–1585 or Mary Bryant Fath (813) 347–8693

EDNF Set to Benefit from a World Premiere! The Ensemble Theatre of Cincinnati is donating the proceeds of the October 8th performance of “Copperheads” to EDNF. “Copperheads” is a world premiere written and directed by Thomas M. Atkinson which will run at the theatre October 9–20, 1996. “Copperheads” is a tragic love story set against the backdrop of a disintegrating rural town. Faith and love collide when a community delivers its soul as a dark ministry coils its mighty influence. Award winning Cincinnati playwright, Thomas M. Atkinson, paints a unique portrait of the passion of the heart and soul. The tickets will sell for $25 and of course the goal is to sell out the house as EDNF will receive 100% of the proceeds. If you are interested in attending the performance or sending a donation, please contact the Box Office Manager, Sandy Gray, of the Ensemble Theatre of Cincinnati: [513] 421–3555. EDNF extends its deepest appreciation to the Ensemble Theatre of Cincinnati, Lynn Meyers, Artistic Director and Thomas M. Atkinson for this wonderful opportunity. All proceeds will go towards hiring a coordinator to activate and run our database. Tell your friends, buy those tickets and let’s spend a night at the theatre in order to find that brighter day!

August, 1996 EDNF — Page 3

Notes From Nancy... Nancy L. Regas R.N., M.S., M.F.C.C. Executive Director It's hard to believe that we are already in the second half of 1996;

Well on July 15th he carried the Olympic torch a segment towards

I’m not sure where time goes, but I am struck by the momentous bits of life that pass our way. It’s important that we take hold of those

it’s destination of Atlanta; as he passed his coach who was giving him the thumbs up, the young man declared

many moments and cherish them... tell those you love how much they mean to you; say thank you for a kind gesture; laugh out loud

as he held the torch high: “This is for you coach.” He later told the reporter that his

(even at yourself) and realize that you are an important part of the big picture.

coach was his best friend who was always there for him.

As I write this, we are approaching the start of the Olympics where

My heart soared with this story. How often

dreams are made. Although when you read this, the games will be over, striving for dreams should never end. Here is a story that I hope

do we let perceived limitations get in the way from achieving our dreams? How often do we

will inspire you as it did me.

discourage others by placing limitations on them? I was touched by this young man (and by the coach who believed in him and cared

There is a young man who has cerebral palsy; he had several

enough to mentor him), and then I looked to my left and saw Melissa’s face and remembered that she inspires me everyday of our

surgeries to regain use of his arm and leg. He went to his high school track coach and said he wanted to run. The coach said no because of

lives. Thank you Melissa and to this young man, and to all of you the CP. The young man persisted until the coach gave in and said yes. who are not afraid to dream dreams and go for the gold. We can all His desire and perseverance paid off as he ran his first race. The be coaches and dreamers ... not a bad way to spend a lifetime. coach recalls the look on his face: “it was as if he said, I told you I could do it.” The coach sadly shared that he almost kept this young With Deepest Appreciation, man from doing what he knew he could.

Nancy L. Regas Executive Director

Pen Pal Program The Board of Directors is pleased to include a new membership service specifically for children and adolescents with EDS and their siblings. We know many of you would enjoy writing to other people with EDS from different parts of the country and the world. If you are interested, please obtain your parents permission, fill out the form and mail it back to:

EHLERS–DANLOS NATIONAL FOUNDATION Pen Pal Program 6399 Wilshire Blvd. Suite 510 Los Angeles, CA 90048 Name: ______________________________________________________________________

Address: ____________________________________________________________________ E–Mail Address: ________________________ City: _______________________________________________________________________ State: ________ Zip Code: ________________ Sex: Male: ❐

Date of Birth: ________________

Female: ❐

What type of EDS do you have, if known? ................................................................................. Type: _______________________ Would you like your Pen Pal to have the same type of EDS? .................................................... Yes: ❐

No: ❐

Doesn’t matter: ❐

Is there a certain age group you would like to communicate with? ........................................... Yes ❐ Age: _____ No: ❐ What type of Pen Pal are you looking for? ................................................................................. Male: ❐

Female: ❐

If you do not have EDS, do you have a sibling or a parent with EDS? ...................................... Yes: ❐ _________ No: ❐ August, 1996 EDNF — Page 4

Either: ❐

— Branch News — Three new branches have been chartered by the Board of Directors— Maine (formerly Waterville) , Northeast Ohio (formerly Cleveland), and Western New York (formerly Buffalo). We now have nine branches chartered, reaching from the rockbound coast of Maine to California’s sunny strand. Branches are increasing their membership through E–mail, reports Barbara Uggen, President of the Seattle Branch. There’s lots of activity on EDNF’s web–site, and branches that tap in are picking up new members. Here’s where branches are being or have been organized, and their branch presidents or volunteer organizers:

AZ Phoenix, AZ: Debbie Krueger, (602) 978–1016. Tucson, AZ: Robin Forsyth, (602) 579–8351.

CA San Francisco Bay Area, CA: At a meeting on July 20, at Santa Rosa Memorial Hospital, Dr George Triadafilopoulos, a gastroenterologist, spoke on gastrointestinal disorders. Matt White was elected as Branch Secretary, replacing Pat Helton. Next meeting will be on September 21 in the San Jose area, with Dr. Eric Ramos as quest speaker. Susan Burkett, President, (510) 934–5567. Please call (510) 947–2358 or e–mail MaggieBuc@aol.com to be added to the mailing list for meeting announcements. Southern California Area: The branch plans to have area–wide business meetings, but separate support groups for different parts of its very large area. A business meeting was set for July 28th at the Culver City Veterans’ Memorial Auditorium. A survey is planned to decide the locations of support groups and topics they will deal with, as well as members’ use of the area’s transportation network. Janet Neal, President (213) 294–7295.

CO Denver, CO: Pat Raynor, (303) 838–2211. FL Tampa Bay Area, FL: On May 30, John A. Hisamoto spoke on physical therapy for EDS patients. The branch, in cooperation with Shriners’ Hospital, is planning a Learning Conference for November (see page 3), open to members and health professionals from Florida and nearby states. Next branch meeting will be in August or September. Peggy Snuggs, President (813) 949–1585. Southeast Florida: Colleen Butcher, (407) 283–9499.

GA Atlanta, GA: April Leaman, (404) 875–4680. IL Chicago, IL: A meeting of officers to plan activities for the rest of the year was held on July 26. Several members are going down to the University of Tennessee Medical Center, Memphis, to participate in a study of osteoporosis in EDS patients. Another group will go in September. Patricia Damler, R.N., President (815) 568–6216.

ME Maine: Officers are: Samantha Paine–Paradis, President (207) 827–1637; Peggy Clark, Vice President; Angela McDevitt, Secretary; and Wanda Johnson, Treasurer. The next meeting is set for August 17 at the University of Maine, Orono. Speaker will discuss speech and hearing problems of EDS patients.

MA Boston, MA: Robin Neas, (617) 767–4553. Springfield, MA and Connecticut Valley: Sue Dion, (413) 667–5230.

MI Detroit, MI: The group is planning a meeting in September, at which they hope to have Dr. Janet Gray Warner, a psychiatrist, speak on “coping with pain in a hidden disease.” Marianne Hoppel, (810) 363–2755.

MN Minneapolis – Saint Paul, MN: A meeting is set for early August at the Southdale Library, Edina, MN to find out whether there is enough interest to form a branch. Jackie Collins (612) 934–4420 and Pam Popken–Harris (612) 541–9307.

MO Saint Louis, MO: Janet Dunn, (314) 645–4114. NJ Bergen – Passaic, NJ: Unable to work at forming a branch right now, Cathy Pizza offers support for EDS patients via the telephone: (201) 440–2519.

Continued

August, 1996 EDNF — Page 5

— Branch News — NY Buffalo – Niagara Falls, NY (Western New York): At a meeting on May 3 the following officers were elected: Lou VanWert, (716) 688–2756, President: Mary Brauer, Secretary; and Kathy Panepento, Treasurer. Next meeting is set for August 2 at the Amherst Main Library. New York, NY: The group met on July 21 at the home of Catherine Alvarez; members exchanged experiences with local physicians and hospitals (particularly about orthopedic problems) and dealing with insurance companies. The September meeting will be at the New York Hospital for Special Surgery, in Manhattan. Dr. Jessica Davis, a geneticist, will speak on the genetics of EDS. Kim Christensen, (914) 632–7264. (For information on the September meeting, call Margie Jones, (212) 744–7744).

NC Greensboro – Winston – Salem, NC: Charlotte Mecum, (910) 722–5879. Raleigh–Durham Area, NC: A meeting is planned for August 29th, 7:00pm at the Unitarian Universalist Fellowship in Raleigh. Jules Leggett, (919) 772–9443. Western Section, NC: While a meeting on June 22 had a small attendance, Hannah Dickson, (704) 253–1323, the organizer, reports they had a successful meeting as a support group. Right on, Hannah!.

OH Akron, OH: Katy George, (330) 253–0706. Cleveland, OH (Northeast Ohio): Dr. Thomas P. Murphy spoke on TMJ and other jaw related problems in patients with EDS at the June 29th meeting at Southwest General Health Center. A social gathering and cruise on the Goodtime III will be held on August 24th. The next meeting will be October 19th at Southwest General Health Center from 1–3 p.m. The branch has drafted a set of by–laws, which, when adopted, may help other branches as they draw up their own by–laws. Darlene A. Clarke, M.S.N., R.N. President, (216) 888–7317, E–Mail: ednfneo@en.com

OR Portland, OR: A first meeting is set for October 13, time and location to be announced. Shulamit Levine, (503) 775–0058.

PA Scranton – Wilkes–Barre – Hazelton, PA: Amanda G. Hart, (717) 341–5791. Southeastern Pennsylvania: Dr. Mark Lavallee, (717) 851–2345. Philadelphia, PA: After a successful meeting on June 15 the next meeting is set for August 3, 2 p.m., at Doylestown Hospital. The branch hopes to get as a speaker a physician who is familiar with EDS. Roberta Kroll, (215) 794–8043.

VA Richmond, VA: First meeting will be September 14, 1 p.m. at Johnston Willis Hospital. Kim Hayes, (804) 739–0739.

WA Seattle, WA: A meeting is scheduled for September 7, at 11 a.m. at the Burien Library. A video on the Human Genome Project, which had been planned for an earlier meeting, will be shown. Barbara J. Uggen, President, (206) 771–3997.

WI Milwaukee, WI: The branch had a good season, but winter weather forced cancellation of several meetings. Further meetings will be on what the branch hopes will be a weather–proof calendar: September, October, November, March, April, and May. All meetings at Children’s Hospital. Lynn Sanders, President, (414) 679–9682.

CANADA Calgary, Alberta: Linda Laverty, (403) 257–2776 . Western Ontario: Christine Bell, Thedford Ontario is interested in organizing a branch.

For Information About Local Branches & Support Groups Your organizer would appreciate a call from you expressing your interest. If you would like to set up a branch in your area, write or call Harold Goldstein, Director, Local Branch Organization, 4701 Willard Ave., Apt 934, Chevy Chase, MD 20815 (301) 656–2053

August, 1996 EDNF — Page 6

Announcing the Birth of...

Manuscript Guidelines for...

The Nancy Hanna Rogowski Memorial Database

LOOSE CONNECTIONS

Dear Members of EDNF:

1. 2.

There is a trilogy that I use with my clients and now I use it with my students in school where I work: Where was I? Where am I? Where am I going? In those three questions, a road map is created for an individual’s personal lifelong journey. Those same questions have to be asked of an organization, and the Board of Directors has done just that in the last year. The first question describes our birth and our evolution in finding persons with EDS. The Foundation started as a dream in the home of it’s founder, Nancy Rogowski.

The second question has assisted us in self evaluation since Nancy’s death and has helped us transform the organization from a person run to a board run foundation. It has moved us from Michigan to California. It has seen the formation of local support groups to band together to continue to search for that brighter day.

The third question makes us discover those gaps that constantly need to be filled, the information yet to be found, the dreams yet unfulfilled. It keeps us going to live and not merely to survive.

In this assessment, the board wants to pay tribute to Nancy Rogowski, the original dreamer for her vision that the Foundation could be created. Despite what people told her, she believed and didn’t give up; she instead made it her life’s work. In October, 1985, the EDNF was born and in 1993 a database was created with the purpose of research... to study the history of the disorder in order to truly find answers. Having the database was not enough, however. Unfortunately we do not have the funds to go the next step which is to secure a coordinator and activate the database. Therefore here is the board’s dream. In October there is an international genetics conference where researchers come from all over the world. We would like to secure the funds ($25,000) to hire the coordinator by the October meeting so that Dr. Tsipouras can present the database manager at the conference. He has agreed that he will find a way to do that if we provide the funding. The board has set that as the foundation’s goal and to be constantly reminded of the original dream, we are naming the database manager, The Nancy Hanna Rogowski Memorial Database. We are encouraging everyone to join the dream by raising the funds necessary to hire a database coordinator in order to “cut the ribbon” on the database and send her sailing to find A Brighter Day. Would you join with us in making October 1996 (EDNF’s 11th anniversary) the beginning of the transformation from dream to reality?

10.

11.

12.

13.

14.

15.

Manuscripts should be voluntary contributions submitted for the exclusive attention of Loose Connections. The submitted manuscripts should be written in a clear and concise manner. The author(s) should write in a style appropriate for lay audience. The content of the manuscript must focus on Ehlers–Danlos Syndrome, complications of EDS, current research on EDS, or the day to day issues of living and coping with EDS. Manuscripts should preferably be submitted on a 3.5" disc in WordPerfect 5.1 or higher or an IBM compatible word processor. If this is not possible, the manuscript must be typed double spaced. Handwritten manuscripts will be automatically rejected. Fancy type fonts, italic, bold and underlines are not to be utilized. We will convert them to our printing style. Manuscripts/discs should be sent to: The Ehlers-Danlos National Foundation 6399 Wilshire Blvd., Suite 510 Los Angeles, CA 90048 A 100 word abstract should be included that stimulates readers’ interest in the topic and states what the readers will learn or how they will be better off after reading the article. Include a title/author biography page. The authors’ biographic information includes: name, credentials, position, professional affiliation, city and state. Example: Thomas Smith, M.D., Professor, Department of Pediatrics, Case Western Reserve University, Cleveland, OH. Tables and figures should be placed at the end of the manuscript after the references. Tables must be numbered consecutively with Arabic numbers and have a title at the top. Figures and tables must be cited in numerical order in the text. Number pages consecutively centered at the bottom of each page. Do not justify the right margin. Do not use running headers or footers. Subdivide the manuscript into main sections by inserting subheads in the text. Subheads should be succinct and meaningful. References are placed at the end of the manuscript. References are cited consecutively by number and listed in citation order in the reference list. Written permission must be obtained from a) the holder of copyrighted material used in the manuscript; and b) individuals mentioned in the narrative or acknowledgment. Letters of permission must be submitted to the publisher of Loose Connections before publication of the manuscript. If you request that your 3.5 disc or original manuscript be returned after publication, enclose a self–addressed envelope or manuscript–sized envelope with sufficient postage affixed. Surveys submitted for publication in Loose Connections must include a letter showing IRB (Institutional Review Board) approval from the researcher’s associated institution. Loose Connections reserves the right to edit all manuscripts to its style and space requirements and to clarify the presentation if necessary.

Thank you for your continued support, With deepest Regards, Nancy Regas RN, MS, MFCC Executive Director

August, 1996 EDNF — Page 7

Repetitive Motions Continued from page 1 Repetitive motions are one of the most common risk factors and are often blamed for many workers’ and hobby enthusiasts’ injuries. In fact, there are numerous names for repetitive related disorders. These include repetitive stress injuries (RSIs), cumulative trauma disorders (CTDs), and overuse syndromes. Tendons, muscles, nerves, ligaments, blood vessels and bursae are often affected. Carpal Tunnel Syndrome (CTS), sometimes referred to as writer’s cramp, is perhaps the best known CTD. It is caused by compression of the median nerve in the wrist area and can occur from chronic irritation and swelling of the nearby tendons as well as direct pressure on the nerve. See section on Mechanical Stress. Most jobs, school, and home tasks involve some repetition. There is no known dose response relationship, so we do not know exactly how much repetition is too much. However, we do know that there is a higher incidence of injuries in highly repetitive jobs. When other risk factors are also present, the risk increases even more. As a guideline, a motion is considered highly repetitive if the cycle time is less than 30 seconds. This means that more than one lift, step, exertion, or motion occurs in 30 seconds.

hand is subjected to a static posture. Likewise, holding your arms above shoulder level requires several muscles to work even though the arms may not be moving. People recover much slower from static postures than dynamic movements. This is in part due to the buildup of lactic acid that occurs in the static body part. The key to determining severity of an awkward posture is how far the joint is away from the neutral position. Most of us will always have some awkward postures in various joints. The idea is to reduce the extremes as much as possible and limit the amount of time the joint is not neutral. Stay tuned for Part 2 in the next issue of Loose — Wrist Diagram — Ulnar Deviation “Awkward Posture”

Neutral Wrist “Normal Posture”

Radial Deviation “Awkward Posture”

Awkward Postures Most EDSers are very familiar with awkward postures. In the world of ergonomics, we actually have ways of evaluating the severity of these postures. We all have a neutral posture that is the least stressful and most powerful position for each of our joints and our entire bodies. The more we deviate from these positions, the greater the risk. For standing postures, neutral is with arms close at the side either straight or at a right angle (90 degrees) with the wrist in line with the forearm. For sitting postures, the upper body is the same as with standing, but feet should be flat on the floor with legs at approximately a 90 degree angle. Thus, neutral basically means arms close to the body with elbows either straight or at a right angle and the wrist straight. If the legs are involved, they too should be at a right angle, but the feet must touch the floor or a footrest. They should never be left dangling (for those short people like me whose feet never seem totouch the floor!!!). The further you move away from neutral, the greater the risk. For example, a severe risk for the wrists would consist of bending them as far forward or backward as they go, as well as rotated out to either side. So if you type and look down at your wrists, they should be in line with the forearm. If they are bent as far as they go either backwards (extension), or forward (flexion) that constitutes a severe awkward posture. See wrist diagram. If hands are slightly bent or moved to the right while typing, that is a minor awkward posture. The same can be said for every part of the body. The neck, for example, should not be bent forward or backward or tilted to the side. The same goes for the back except you should also avoid twisting motions. In addition, there is a special type of awkward posture known as a static posture. This occurs when a body part is not moving, but is still doing work. Thus, if you hold an object in your left hand while using your right hand to work on it, the left

Extension “Awkward Posture”

Flexion “Awkward Posture”

Connections to find out how.

Forceful Exertions What constitutes a forceful exertion? You may be surprised by the answer. While it is difficult to use an exact number to determine the severity of an exertion, simply holding a pen too hard or banging on the keyboard can be considered forceful. Of course, if you lift 50 pounds or more, that also constitutes a forceful exertion. For many of us, lifting only 5 pounds may be forceful. Computer programs are often used by ergonomists and biomechanical engineers to analyze the stress on each of the joints. For any given exertion not all joints suffer the same amount of stress. In depth analysis to determine whether force is a risk factor is not really necessary in people with EDS because almost everything can end up being forceful. Thus, we should always strive to limit the amount of weight we carry. Anytime we use our smaller, weaker, muscles (like those in our forearm commonly used when we pinch objects), will result in a more forceful exertion than if we use the larger, stronger muscles in the upper arm. Likewise, the reason we lift with our leg muscles and not our back muscles is that leg muscles (especially the quadriceps) are one of the strongest muscle groups in the body. Back muscles

August, 1996 EDNF — Page 8

generally are much weaker.

Mechanical Stress

some type of support.

Ever leaned on your elbow and your entire arm went numb? That’s what the risk factor mechanical stress is all about. Direct pressure on sensitive areas of the body. The most common places where this occurs is at the elbow, wrist, fingers and back of the knees (usually by or on the popliteal artery). Activities often associated with direct pressure on nerves or soft tissues include leaning on a sharp desk edge while writing or typing, sitting improperly, wearing constrictive clothing, using standard, poorly designed scissors, taking your frustrations out on a helpless stapler or hole punch and using body parts as tools (hammers, in particular. Don’t laugh. It happens more than you think!!). If we do this over a period of time, nerve damage and other soft tissue injuries may occur.

Vibration (Whole Body and Segmental) There are two main types of vibration: whole body and hand/arm or segmental. Whole body vibration affects the entire body. The main exposure for most of us would be riding in a car or truck unless we happen to work on a vibrating platform. Fortunately, today’s cars and trucks have built–in dampening protection and provide much smoother rides. Segmental vibration occurs in one part of the body and is most common when using power tools. Raynaud’s phenomenon, also referred to as Hand–Arm Vibration Syndrome or White Finger, is often caused by exposure to hand/arm or segmental vibration. This disorder affects the small blood vessels in the fingers and can cause significant pain and loss of feeling. Raynaud’s is characterized by recurrent episodes of finger blanching due to closure of the arteries in the fingers (digital arteries). Symptoms include “intermittent numbness and tingling in the fingers, skin that turns pale, ashen, and cold; and eventual loss of sensation and control in the fingers and hands”. Vibration has other effects as well. People who use vibrating tools often have to grip harder to maintain control, thus adding a forceful exertion as a risk factor. You only have to watch a construction worker using a jack hammer to see how vibration affects their bodies.

Extreme Temperatures (Cold and Hot) Cold temperatures can often aggravate Raynaud’s and cause muscles to tighten up. Bundling up to keep warm can keep out the cold, but wearing layers of clothing can also decrease range of motion and increase the likelihood of injury. Gloves in particular can be a substantial problem if they are not chosen carefully for the type of activity and/or they do not fit well. See section on Poorly Fitting or Poorly Chosen Gloves. Many people are also adversely affected by cold in various other ways. These include breathing problems, fatigue, dexterity, sensory sensitivity, and grip strength. For those of us who live in arctic weather, we are also subjected to icing conditions which impair our coordination even more than normal and can result in near misses, severe slips, and falls. Both can cause substantial injuries. Needless to say, we should limit the amount of time in very cold temperatures and if we do venture outside, we must be properly clothed and have

Extreme heat, especially in conjunction with high humidity, is tough on anyone. Disabled people and the elderly tend to be affected even more. Besides the possibility of heat cramps, heat exhaustion, or heat stress, hot and humid weather can be extremely fatiguing. Avoid very hot weather whenever possible. Some people with EDS appear to be sensitive to the direct sun and should try to avoid or limit exposure. Even those that don’t have EDS should keep in mind that certain medications, such as tetracycline, can cause sun sensitivity even in “normal” people.

Poorly Fitting or Poorly Chosen Gloves Gloves are often necessary and can be protective. However, when we choose the wrong gloves or they do not fit well, they become potential risk factors or stressors. Most gloves add bulk and can actually increase the amount of force necessary to do a task. For example, try wearing gloves while writing. Even thin ones can cause you to use more force than without gloves. Likewise, gloves can interfere with the ability to feel and therefore, can throw off your ability to judge how much force is needed. If gloves are too small, they can actually cut off circulation and increase fatigue. If they are too large, they can interfere with tactile ability and add force, another risk factor, to your task. ❖❖❖ The most common risk factors you will probably encounter on a daily basis are repetitive motions, awkward postures, forceful exertions, and mechanical stress. These also tend to be more significant risk factors than the other three mentioned above. Remember, the more risk factors present and the more severe each risk factor, the greater the possibility of injury or discomfort. Thus, it is imperative to try and avoid, reduce, or eliminate the most severe risk factors and to lessen the number of total risk factors present. Does this seem like a daunting task? After all, how can a mere mortal reduce or eliminate problems as diverse as repetitive motions, awkward postures, forceful exertions, mechanical stress, vibration, extreme temperatures, and ill chosen or poorly fitting gloves? Stay tuned. Same newsletter. Next issue. Why? Because the next issue’s article will answer the all important question: How to control these risk factors in the home, at work, and in school.

References: U.S. Department of Labor, Occupational Safety and Health Administration, Ergonomics: The Study of Work, 1991, pp. 1–19. Vern Putz–Anderson, Cumulative Trauma Disorders: A Manual for Musculoskeletal Diseases of the Upper Limbs, 1988, Taylor & Francis, pp. 1–25. Thomas J. Armstrong, “Ergonomics and Cumulative Trauma Disorders,” Hand Clinics, Vol. 2, No. 3, August 1986, pp. 553–565. U.S. Department of Labor, Occupational Safety and Health Administration, Ergonomics Program Management Guidelines for Meatpacking Plants, 1990. pp. 1–10.

Views expressed herein are only those of the authors, and should not be construed to represent the opinions or policies of the Ehlers–Danlos National Foundation and it’s elected officials August, 1996 EDNF — Page 9

As We Go Rolling Along...

My New Set Of Wheels

By Florie Brizel

By Darlene Uggen

Lately I’ve been having trouble getting around. Actually, for the last year and a half, my hip has a mind of it’s own. I had surgery which worked for awhile, but I’ve been back on crutches for about two months now. To top it off, I injured my wrist from using the crutches, so I haven’t been able to do much of anything in my normal fashion. Sound familiar to some of you? I hope not, but I know many of you understand all to well. All in all, I’d say I’ve been a bit nonplused by the whole cycle of events, and I’ve been scrambling to figure out how to cope with my new circumstances. While many people in my immediate circle of friends and family have encouraged me to get a wheelchair (motorized or otherwise), I’ve been having a hard time trying to bend my mind around that idea. Never in my life did I imagine I would need a wheelchair. It doesn’t jive with my mental picture of who I am and how I am. Yet for the past 18 months, I’ve limited my social activity because I dread the logistics of getting to and fro; I miss my friends and they miss doing things with me. Being even vaguely realistic about my situation, I know I would now benefit from mobility assistance.

family want to do with me. But the funny thing is, when I asked my friends if they would mind pushing me in a wheelchair (because I was feeling like it was asking them to help me yet again), they were so excited because it meant I could and would be doing more with them. Silly me. Good thing I asked. Find a wheelchair supplier who is sensitive to wheelchair users who have unusual circumstances, such as ours. One who will not say cruel things like “YOU need a wheelchair? You are so young!” or “What happened to you?” How do you find a place like this? If you’re out shopping and see a friendly looking person in a wheelchair, kindly ask that person where she goes for her wheelchair needs and services. Ask if the people there will be sensitive, etc. I did this and people were unbelievably helpful. I also got great local information.

Look for a chair the same way you would look for a car, or couch, or bicycle. Think about your immediate needs and consider your long range prospects. Determine whether you need a But even when thinking about my life in a motorized or a manual model. Shop around. wheelchair is kind of scary, depressing , nerve wracking and expensive. What will I have to Look at lots of chairs. Sit in them, wheel about. Compare prices. Try to negotiate the best deal change in order to be mobile? What about my car? Will I need a companion to help me? What possible. Ask about service. kind of chair do I need? How do I shop for Wheelchair suppliers come in many forms. You one? This has been very hard for me and taken can buy direct from a medical supply facility. a lot of guts, energy and courage, so I thought Or there are wheelchair “brokers” or I’d share my thoughts and experience with you. middlemen, who come to your home, You never know when it might prove useful. demonstrate for you in the privacy of your Herewith a few hints and tips: living room and handle all of your service If you think you might need a wheelchair, shop around before you actually need it. Plan ahead. Psychologically, it is much easier to look for a chair when you can walk out of the store than when you will need to roll out. See what is out there, check out the costs, investigate the ramifications. Give yourself time to adjust to the idea and reality of new mobility. When shopping for a wheelchair, don’t go alone. Emotionally it can be very draining. Take a friend or someone who will be supportive. Someone who can help you keep a good attitude about the whole thing. Someone who will take you out to lunch afterwards!

needs directly. Take the time to investigate. Each has advantages. Some options may be better if you live in a rural area rather than a metropolitan location. Each city and town will be different, so check it out. If you have insurance, ask your claims adjuster for purchasing information too. Insurance companies know the local suppliers and they like it when they know you are working with them to minimize costs. Finally, remember this: the whole idea behind a wheelchair is to get you mobile and independent once again. In the words of Martha Stewart, “It’s a good thing”.

Seek support from friends and caregivers before you make a radical change such as this. I know I often feel like a burden, or an added consideration to everything my friends and

There you stand, and I see you stare, Thinking, poor dear, she's stuck in that chair. But I'm not sad, I'm very happy because I haven't forgotten the way it was. You'd say, How about a trip to the zoo, A walk in the park will be good for you. I was thinking tomorrow, I'll be a wreck, from my aching feet to the pain in my neck. You'd want to go shopping all over town. I was thinking but, there's no place to sit down. For you it's a snap just to go to the store, But for me the ordeal was more of a chore. Now I can go where ever I please I can shop in the mall with new found ease, Do all those things that have to be done, and even go out and have some fun. So, do you want to know how it really feels to be sitting here between these wheels? Can you remember back that far When you got your very first car? Well, that's how these wheels feel to me. They don't hold me down, they set me free. So, don't think all those pitiful things: These aren't wheels, I think they're wings.

In Loving Memory Of Our Daughter, Nancy Hanna Rogowski On this first anniversary of her death, we, her family, wish to say how very proud we were of her accomplishments in founding

Ehlers–Danlos National Foundation She lived only for a short time, but in her thirty–eight years she showed courage and determination in her battle with E.D.S. Her dream in the twelve years after her diagnosis was how could she help others by support, knowledge and hopefully research. This she accomplished! She will be remembered by her family and will live in our hearts forever.

“We Love You Nancy” Her Family

August, 1996 EDNF — Page 10

Ehlers–Danlos National Foundation — Back Issues — 6399 Wilshire Blvd. Suite 510 Los Angeles, CA 90048 (213) 651–3038 Check Your Library For Missing Back Issues Of Loose Connections & Articles Past Issue Requested

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Letters To The Editor Dear Editor: After consulting with many doctors, our daughter Lindsay was finally diagnosed with Ehlers–Danlos Syndrome. Even though we consulted with the best geneticists at our local Buffalo Children’s Hospital, none of them could tell us which type EDS Lindsay had.

Congressional Health Reform Chairpersons. I wrote to the State Insurance Department, to every member of the HMO Board of Directors as well as anyone remotely connected with health care After much research, we finally learned about Dr. Petros Tsipouras in throughout the state of New York. My an article from Loose Connections. We decided that it would be wise premise in each letter was the same – how can an insurance company arbitrarily to have Lindsay evaluated by Dr. Tsipouras. dictate the health care of a member— At this particular time, our health insurance was through a very (only an ID and a claim history to popular local HMO and we naturally were expected to stay within them)? I even sent copies of the confines of the HMO network. The HMO preferred that we stay these letters to the HMO’s in the network and found us what they believed to be our best local consulting MD at authority. his private office. We were secured an appointment with a rheumatologist generated by I was fortunate to have provoked the interest of one particular State the consulting MD who worked for the Medical Review Department Senator who intervened repeatedly on our behalf. The HMO finally of the HMO. He assured us that this physician would give us the had to answer to someone! answers which we were looking for. I am happy to say that we finally won our battle and that our After waiting several hours in a waiting room filled with crippled whopping $250 consultation fee was covered. I can only imagine geriatric patients, it was finally our turn. What a waste of time! She what it cost this HMO in man hours, paperwork and aggravation. It could not tell us anything which we didn’t know and I came away was surely much more than Dr. Tsipouras’ modest fee. from this appointment greatly disappointed. Our HMO surely wasted The reason which I write this letter is simple, I want others to know their money in this instance. that they do not have to be denied proper care or evaluation because After this, I continued to read as much as I could and after several of the special (money) interests of a health insurer. These stringent, months, we decided it would be wise to again pursue an appointment unreasonable demands imposed upon members of HMO’s can be with Dr. Tsipouras. I again asked the pediatrician for an out of dealt with by means of persistent, organized action. I hope that network referral. At this time he refused to do this. I was very upset someone may be helped by our story and that it offers at least a base to learn that his reason for not pursuing the matter was because he from which the next HMO victim may work. was afraid of jeopardizing his “good standing” with this HMO. Sincerely. Needless to day, we found another pediatrician—one who was not Mary Bracer afraid to fight for her patient. Our new pediatrician followed proper protocol and tried to obtain this special referral for us. Again we Dear Editor: were denied. Again the HMO intervened and said that they found a My name is Karen. On January 31, 1996 my daughter Amanda, age local MD who could provide us with answers. The HMO doctor 10, was diagnosed with Ehlers–Danlos Syndrome, possibly type II. arranged for an appointment with a dermatologist who would She dislocates both her shoulders and at the present time her right perform skin biopsies on Lindsay and that would be the answer. We knee cap is slipping on her. She has hyperextensible joints but her acquiesced and agreed to keep the appointment which was made for skin is not able to be pushed away at the present time. Her larynx us. (This new pediatrician guaranteed us that we would have to jump began collapsing last November. The doctors thought it was stress through the proverbial hoops). Days before this scheduled induced asthma. She is very involved in ice skating and has been appointment, the dermatologist’s office called and canceled our doing so since she was 3 years old. Her doctors told me that she was appointment and told us to consult the HMO. Apparently the very lucky that we started her at such a young age as she had dermatologist knew she could not give us the answers which we strengthened her leg muscles tremendously. She is no longer allowed needed and informed the HMO to cancel our consultation. The HMO to do her jumps, so she is now learning ice dancing and doing a lot of was not happy and neither were we. At this point, I scheduled an footwork. appointment with Dr. Tsipouras (it was 6 months away, but I was Since I found out about Amanda’s condition I have worked very glad to have it). closely with Linda at the National Foundation and Peggy Snuggs, I informed the HMO of our appointment and was told that I had no President of the Tampa Bay Chapter. They have pulled me through right to make such an appointment without prior approval. They some very hard times. Thank you both very much. certainly would not pay for this service. Being sufficiently angered On May 18, 1996, I held a square dance pot luck dinner fund raiser by this point, I assured them that I would not disappear and that I in Copper City, Florida for the Patricia Wood Research Fund. I am would become their worst nightmare—a mother with a mission. involved with a fantastic square dance club that helped me put this I appealed via their proper procedure and again was denied. I was fund–raiser together. We worked on it for 2 months and our caller even informed that if I went to the media or consulted a lawyer that it printed up all our advertising and door prizes. I was also able to get wouldn’t do me a bit of good—others had done it before. I was donations from local merchants and restaurants in the area. The issued a member advocate (I use this term loosely) and it was his American Legion Hall in Cooper City donated their hall for a idea that I go to Connecticut and pay the expense out of pocket. Now nominal fee. We had over 200 people in attendance and raised $3,700. I ended up spending less than $200 which included the hall it had become a matter of principle. rental. If you would like more information regarding this fund–raiser, My next step was to visit my local alderwoman’s office and obtain please contact me through EDNF. the names and addresses of anyone in the State Capitol connected Karen Martinez with health care reform. I wrote letters to the State Senate and August, 1996 EDNF — Page 13

1995 Memorial and Honorariums

We’re On the Internet & The World Wide Web

As referenced in the last newsletter, the memorials and honorariums for 1995 still have not been located. Linda Neumann–Potash, who runs the day to day operations in our new office, has searched diligently through all the records and hardware we obtained from the Michigan office.

Contact the Ehlers–Danlos National Foundation at our E–mail address: loosejoint@aol.com

If you know a donation was made to a particular person and from whom and would like those people recognized, we would be glad to print those in the final newsletter of 1996. Please submit those names to Linda at our new Los Angeles address. As you can see from these last two newsletters, we consider memorials and honorariums an important part of our communication with our members.

Ehlers–Danlos Syndrome World Wide Web Home Page

Memorials & Honorariums

Thank you again for your understanding. We learn and grow everyday.

In Memory of Nancy Hanna Rogowski F. Mitchell Cummins, M.D. Marjorie Klingaman In Honor of Bruce & Linda Potash Barry Pinsky & Linda Sharlin Isabell & David Novak In Memory of Millie Gaspin, beloved sister of Bernard Chapnick Lil Feingold Risha Shem Tov In Loving Memory of the Best Mom – Helen L. Rafaill Nancy & Louis Regas In Memory of Mrs. Florence Pawloski Nancy Hill William K. Gardner John & Lori Schwab Michael & Janice Pawloski Mitsubishi Motors Kris Shimamoto In Memor y of Ray Lippenberger Margene & Philip Weiss William Thompson Missy Steinhaver Ken Taylor Claudia Speakman Martin & Lucille Zitz R.A. & Beulah Horn In Memor y of Rick Wonders Michael Doulton and Family Mr. & Mrs. Daniel Hicks The Piper Family John Papez Insurance Agency Connie Davis Lynne Erlich

In Loving Memory of Loyola “Toni” Buckley Ruth LeVien Gary & Janice Gump Philip Johnson Evelyn Brown Arthur Reily Harold Daughtery Committee T1–Telecommunications Gate–Net Associates, INC William & Adelaide Von Alven Verilink Corporation Pamela Popken–Harris Ellie & Al Manthos Marlene Keyak & Dawn Dearstyne Haln Alice Reid Stan & Cathie Rey James Eitel Howard Brainen & Marsha Kirschbaum The Staff at Custom Printing Teresa & John Huft Judy, Tom & Lorien Reid Betty & Gary Goulart Robert & Mary–Ann Orr William & Imedlada Hampton Percy Pool Friends & Collegues of Crystal Semiconductor Corporation Susan Alden Joe and Donna Santo Itron, INC Raymond & Margaret Eiden Julie Alden Karen Curtis Meryl Brutman William & Bernice Sanko Rebecca Doty Joan and Richard van Gelder

August, 1996 EDNF — Page 14

A wonderful site with great sources of information about EDS, articles of interest, medical resources, and related topics. http://www.phoenix.net/~leigh/EDS To sign up for the on–line support mailing list, send an E–mail post to eds– request@stgenesis.org with the subject as subscribe, no note in the body is necessary. To receive a digest version of the mailing list, send an E–mail post to eds–d–request@stgenesis.org with the subject subscribe, no note in the body is necessary. It’s as easy as that to get connected with EDSers. Please surf by and join us, we are a very supportive group!!!

Bone Metabolism in Ehlers–Danlos Syndrome Research Study Study requires participants to have Ehlers–Danlos Syndrome and be willing to have measurements of blood and density done at the Clinical Research Center (CRC) at the University of Tennessee in Memphis, TN

For information, please contact: Dr. Carbone at (901) 448–5743

Thank You The publisher would like to thank: Jim & Debbie at Premier Impressions in Strongsville, OH. J. P., Alan and Brenda at J. P. Graphics, Inc. in Berea, OH. For their expert assistance with our newsletter.

Ehlers–Danlos National Foundation 6399 Wilshire Blvd. Suite 510 Los Angeles, CA 90048 (213) 651–3038 — Membership Form — Name: __________________________________________________________________ Date: _____________________________________ Address: ________________________________________________________________ Sex: F: ❑ M: ❑ Birthdate: ____________________ City: __________________________________ State: _______ Zip: _______________ E–mail Address: ____________________________ Telephone Number: (______) _______________________________________________ Fax Number: (______) _______________________ How did you hear about the foundation?: ________________________________________________________________________________ Are you or a family member diagnosed with Ehlers–Danlos Syndrome? ......................... Yes: ❑ No: ❑ Who: _________________________ If yes, do you know what type?: ___________________________ Are you a new member to Ehlers–Danlos National Foundation? ...................................... Yes: ❑ No: ❑

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“Ehlers–Danlos National Foundation” ❑ Individual Membership _______________________________________________________________________________________ $20.00 ❑ Family Membership __________________________________________________________________________________________ $25.00 ❑ Corporate Membership _______________________________________________________________________________________ $ 50.00 ❑ Patron Donor ______________________________________________________________________________________________ $250.00 ❑ Benefactor Donor __________________________________________________________________________________________ $500.00+ ❑ Corporate Gift ____________________________________________________________________________________________ $____.__ Additional Donation _________________________________________________________________________________________ $____.__ ❑ Check here if you are donating to the foundation, but are not interested in receiving our quarterly newsletter, “Loose Connections”. ❑ Patron or benefactor donors: Please check here if we may acknowledge your donation in our newsletter. Only your Name / City / State will be printed. Please take a few minutes to list problems or ideas that you would like to see covered in future issues of “Loose Connections”. The Ehlers— Danlos National Foundation was created to help everyone and your ideas and thoughts are very important to us. __________________________________________________________________________________________________________________ __________________________________________________________________________________________________________________ __________________________________________________________________________________________________________________ __________________________________________________________________________________________________________________ __________________________________________________________________________________________________________________ If you are interested in corresponding with other families, please sign the release below. Please note that only your name, address and phone number will be released and ONLY to other members. All other information you provide to the foundation will remain strictly confidential. You are not obligated to sign this release. ❑ Check here if you'd like the name and address of three other members in your area to communicate with. ❑ Check here if you want to be notified about a support group in your area (Your name will be forwarded to the nearest branch). Signature: _______________________________________________________________ Date: _____________________________________

The EDNF does not lend, sell or trade it’s membership list to any individual or organization. The EDNF is a not for profit corporation. Your donation may be tax deductible and is sincerely appreciated. August, 1996 EDNF — Page 15

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EHLERS–DANLOS NATIONAL FOUNDATION NON–PROFIT ORG. U. S. POSTAGE PAID PERMIT NO. 376 BEVERLY HILLS CA 90210

Ehlers–Danlos Syndrome (EDS) is a group of heritable disorders of the connective tissue often characterized by hyperextensible skin, hypermobile joints, easy bruisability of the skin, and a bleeding diathesis. EDS is named for two physicians (Ehlers and Danlos) who described forms of the condition in the early 1900s. At least nine forms of Ehlers–Danlos Syndrome have been described, which are not gradations in severity, but represent distinct disorders which “run true” in a family. The Ehlers–Danlos National Foundation (EDNF) was created in 1985 in an effort to provide emotional support and updated information to those who suffer from the disorder. In addition, EDNF serves as a vital informational link to and from the medical community. Loose Connections, the official communications link of EDNF, is published on a quarterly basis. Subscription information may be obtained by writing to:

Ehlers–Danlos NATIONAL National Foundation EHLERS–DANLOS FOUNDATION ess Addr New e #s Phon and

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