Loose Connections (May 1996)

August, 1996 EDNF — Page 1

Vol. XI, Number 2 The Official Communications Link Of The Ehlers–Danlos National Foundation May, 19966399 Wilshire Blvd. Suite 510 Los Angeles, California 90048 (310) 277–4900

Ergonomics: Recognition and Evaluation ofRisk Factors and Potential Stressors – Part 1

By Meryl B. Brutman, MPH – EDNF Board Member and Founder of Chicagoland Branch. Meryl has EDS type III.

Views expressed herein are only those of the authors, and should not be construed to represent theopinions or policies of the Ehlers–Danlos National Foundation and it’s elected officials

Continued on page 8.

This is the first of a two–part series on therecognition, evaluation, and control ofpotential risk factors that can lead toincreased injury, discomfort, and/or fatigue.This issue discusses each of the sevenpotential risk factors so you can recognizethem in any situation. It will also provideguidelines to determine the severity of therisk. Part 2, which will be presented in thenext issue of Loose Connections, will explorethe variety of control methods available toreduce or eliminate the potential risk factorsintroduced here.

The word Ergonomics comes from the Greek“ergo” and “nomos” which translated means“work” and “study of” or “laws of”. Thus,ergonomics is simply the study of or laws ofwork or of the relationship between peopleand their work environment. The definitionused by the Occupational Safety and HealthAdministration is more specific: “adaptingjobs and workplaces to the worker bydesigning tasks, tools, and equipment thatare within the worker’s physical capabilitiesand limitations”. Ergonomics, however, isnot limited to the workplace. It is amultidisciplinary science that includes thefields of medicine, physiology, anatomy,engineering, psychology, chemistry, andbiomechanics just to name a few. So howcan Ergonomics help people with Ehlers–Danlos Syndrome?

Many of us have probably heard the termErgonomics used as an adjective in various

TV commercials and print ads. It isespecially common when describing cars. Anergonomically designed interior andergonomic displays and controls. What theseads are referring to is analogous to the terms“perfect fit or fits like a glove”. Thus,Ergonomics aims to be user friendly bydesigning things that are easy to operate bothmentally and physically while also requiringthe least amount of energy and effort. Ideally,objects requiring strength and precisionwould be designed for the least ablepeople in society, usually the elderly anddisabled populations. Unfortunately, as manyof you can attest to, there are far too manyheavy doors and poorly designed itemscurrently in use. The good news is thatmanufacturers, engineers, designers, etc. aremuch more aware of these issues and arestarting to incorporate ergonomics into theirproducts.

Risk Factors andPotential Stressors

In order to design or choose ergonomicrelated items, we must first understand whatpotential risk factors and stressors need to bereduced or avoided completely. We must alsorealize that buying an ergonomic tool doesnot guarantee an ergonomic fit. Many itemsare labeled as ergonomically designed, butreally fall short of this distinction. Likewise,the tool or item must be correctly matchedwith the intended use or one will not benefitfrom choosing an ergonomic item and caneven make things worse.

There are seven major risk factors orpotential stressors. They are as follows:repetitive motions, awkward postures,forceful exertions, mechanical stress(direct pressure on nerves and soft tissues),vibration, extreme temperatures (both toolow and too high) and the use of ill fittingor poorly chosen gloves. The more riskfactors present, and the more severe eachrisk factor, the higher the potential forinjury or discomfort.

The evaluation of severity mentionedbelow with each risk factor is just aguideline. It is impossible to exactlypredict injuries and to avoid all potentialrisk factors. Therefore, your mission(should you decide to accept it) is toreduce as many risk factors as possible andto limit the severity of each one. Evenwhen only one severe risk factor is present,the goal is still to reduce it as much aspossible within financial constraints andcurrent knowledge.

A detailed discussion of possible controlmeasures for each risk factor will bepresented in the next issue of LooseConnections as Part 2 of this article. Theimportant thing to remember, is thatErgonomics, like Medicine, is as much anart as a science. You know your bodies thebest, so you need to consider what feelsgood to you. One caution though: somepostures – like slouching – may seemcomfortable at first, but can lead toinjuries.

Continued on page 8.

This is the first of a two–part series on therecognition, evaluation, and control ofpotential risk factors that can lead toincreased injury, discomfort, and/or fatigue.This issue discusses each of the sevenpotential risk factors so you can recognizethem in any situation. It will also provideguidelines to determine the severity of therisk. Part 2, which will be presented in thenext issue of Loose Connections, willexplore the variety of control methodsavailable to reduce or eliminate thepotential risk factors introduced here.

The word Ergonomics comes from theGreek “ergo” and “nomos” which translatedmeans “work” and “study of” or “laws of”.Thus, ergonomics is simply the study of orlaws of work or of the relationship betweenpeople and their work environment. Thedefinition used by the Occupational Safetyand Health Administration is more specific:“adapting jobs and workplaces to the workerby designing tasks, tools, and equipmentthat are within the worker’s physicalcapabilities and limitations”. Ergonomics,however, is not limited to the workplace. Itis a multidisciplinary science that includesthe fields of medicine, physiology, anatomy,engineering, psychology, chemistry, andbiomechanics just to name a few. So howcan Ergonomics help people with Ehlers–Danlos Syndrome?

Many of us have probably heard the termErgonomics used as an adjective in variousTV commercials and print ads. It isespecially common when describing cars.

An ergonomically designed interior andergonomic displays and controls. What theseads are referring to is analogous to the terms“perfect fit or fits like a glove”. Thus,Ergonomics aims to be user friendly bydesigning things that are easy to operateboth mentally and physically while alsorequiring the least amount of energy andeffort. Ideally,objects requiring strength and precisionwould be designed for the least ablepeople in society, usually the elderly anddisabled populations. Unfortunately, as manyof you can attest to, there are far too manyheavy doors and poorly designed itemscurrently in use. The good news is thatmanufacturers, engineers, designers, etc. aremuch more aware of these issues and arestarting to incorporate ergonomics into theirproducts.

Risk Factors andPotential Stressors

In order to design or choose ergonomicrelated items, we must first understand whatpotential risk factors and stressors need tobe reduced or avoided completely. We mustalso realize that buying an ergonomic tooldoes not guarantee an ergonomic fit. Manyitems are labeled as ergonomicallydesigned, but really fall short of thisdistinction. Likewise, the tool or item mustbe correctly matched with the intended useor one will not benefit from choosing anergonomic item and can even make thingsworse.

There are seven major risk factors orpotential stressors. They are as follows:repetitive motions, awkward postures,forceful exertions, mechanical stress(direct pressure on nerves and soft tissues),vibration, extreme temperatures (both toolow and too high) and the use of ill fittingor poorly chosen gloves. The more riskfactors present, and the more severe eachrisk factor, the higher the potential forinjury or discomfort.

The evaluation of severity mentionedbelow with each risk factor is just aguideline. It is impossible to exactlypredict injuries and to avoid all potentialrisk factors. Therefore, your mission(should you decide to accept it) is toreduce as many risk factors as possible andto limit the severity of each one. Evenwhen only one severe risk factor ispresent, the goal is still to reduce it asmuch as possible within financialconstraints and current knowledge.

A detailed discussion of possible controlmeasures for each risk factor will bepresented in the next issue of LooseConnections as Part 2 of this article. Theimportant thing to remember, is thatErgonomics, like Medicine, is as much anart as a science. You know your bodies thebest, so you need to consider what feelsgood to you. One caution though: somepostures – like slouching – may seemcomfortable at first, but can lead toinjuries and discomfort in the long run.


The Chair’s CornerRebekah L. Sheyda

Chair, Board of Directors

LOOSEConnectionsPublished Quarterly By

Ehlers–DanlosNational Foundation6399 Wilshire Blvd. Suite 510

Los Angeles, CA 90048Phone: (213) 651–3038FAX: (213) 651–1366

e–mail: [email protected]

Executive DirectorNancy Regas, R.N., M.S., M.F.C.C.

PresidentGerald Rogowski

Vice PresidentLinda Neumann–Potash,

R.N., M.N.

Vice Presidentfor Patient Advocacy

Susan Stephenson,R.N., B.S.N., C.C.R.N.

SecretaryKaren Czerpak, R. N.

TreasurerHarold Goldstein

Board of DirectorsRebekah Sheyda, Chair

Meryl B. Brutman, M.P.H.Karen Czerpak, R.N.

Harold GoldsteinLinda Neumann–Potash,

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

Gerald Rogowski

MedicalAdvisory Board

Petros Tsipouras, M.D., ChairPatrick Agnew, D.P.M.Robin Bennett, M.S.William Cole, M.D.Mark Evans, M.D.

Richard Wenstrup, M.D.

Medical ConsultantsPat 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.

EditorsMeryl B. Brutman, M.P.H.

Darlene A. Clarke M.S.N., R.N.Karen Czerpak, R. N.

Harold GoldsteinLinda Neumann-Potash, R.N., M.N.

Editor & Publisher Keith G. Clarke ([email protected])

While watching the recent Olympic opening ceremony, I was struck when one of thespeakers encouraged all listeners to reach for a “brighter tomorrow.” How exciting thatour motto is being broadcast over much of the globe! How appropriate that this wasmentioned to thousands of athletes. While many of the events were individual,team competition was also important. And all were concerned with eachcountry’s tally of medals as the games progressed.

Remarkable similarities can be drawn between the EDNF and the charge to theOlympic athletes. Each of us is responsible for ourselves, but we are all concernedwith the well–being of the Foundation. The thriving local branches can be seen asteams working to excel – both for themselves and the good of all. Win or lose, theGames continued.

Relay events constituted an important aspect of the Olympic Games. In these competitions, eachsuccessive athlete had to do his or her best. Consider what would have happened if one of theparticipants dropped out of the race midway through. Regardless of the abilities of the other athletes, theteam 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 ofthe relay. Nancy Rogowski not only established the benchmark to which the Foundation must strive, sheput 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 therace and we are all most grateful for what she accomplished by establishing the Ehlers–Danlos NationalFoundation. We are proud to announce that the Ehlers–Danlos Syndrome Database Manager has beennamed in honor of the Founder of EDNF, Nancy Rogowski. Now, each person who receives this issue ofLoose Connections, has an opportunity to actively participate in the race. Please read the enclosedinformation 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 isnot always easy, and the track is not always smooth, but we continue. Thank you to the many volunteerswho work so hard for the success of all. I encourage you to become active at the local and nationallevels. It is when we all strive to win that we will reach a brighter tomorrow.

— Fund Raiser —— Greeting Cards —

The foundation will be selling a box (8 in a box) of Tara Leary’s beautifulgreeting cards for $10 plus $1.75 (for shipping and handling). The cardsare 5 x 7 in size with a gorgeous water color on the front and blank insidewith plenty of space to send good wishes to your friends and family. Eachof the boxes contains a 5 x 7 card with information about EDNF and theoutside of the box has a sticker with our address. We are hoping the localsupport groups will embrace this project by purchasing cases (a case has20 boxes) for their members to sell and purchase themselves. Once yousee them, you'll be hooked! Please contact Tara at the following address orphone number to place an order:

Tara M. Leary222 Williamstown Ct. — Newington, CT. 06111

(860) 667–2079Make checks payable to EDNF.

EDNF Set to Benefit from a World Premiere!

The Ensemble Theatre of Cincinnati is donating the proceeds of the October 8th performance of “Copperheads” toEDNF. “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 lovecollide when a community delivers its soul as a dark ministry coils its mighty influence. Award winningCincinnati 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% ofthe 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!


Shriners Hospital Hosts Tampa Bay Branch,EDS Learning Day

November 1996

The Tampa Bay Chapter and Shriners Hospital–Tampa Bay unit areworking together to bring current information, education, andsupport to patients, families , friends and health care professionals inFlorida. In addition to offering chapter support and hospitality sinceour beginning in October 1995, the hospital has provided treatmentto many patients with EDS for orthopaedic related symptoms such asscoliosis, joint dislocations and instability.

In a continued effort to bring patients with EDS and health careprofessionals together, an EDS Learning Day is being planned atShriners Hospital for a weekend in early November. It is our hopethat patients and health care professionals from Florida, as well asother states, will take advantage of this unique learning opportunity.Current plans include a family social on Friday evening, clinics forpatient and physician interactions on Saturday and brunch followedby informational sessions on EDS. Reduced lodging will be availableto those wishing to stay over and enjoy the area’s attractions onSunday. As plans are finalized, more information will be available. Ifthis event is well attended, it may become an annual event or a modelfor regional learning days hosted by other branches.

The Tampa Bay Branch is grateful to Shriners Hospital for itsinterest, support and involvement with patients who have Ehlers–Danlos Syndrome. Ashley, daughter of chapter president, PeggySnuggs, has experienced first hand, the excellent medical care thatthe hospital provides. It was after Ashley’s spinal fusion at thishospital, that the idea for a local branch and support group began.Since that time, three meetings have been held at the facility bringingtogether over 60 members.

For more information about the Learning Day or the Tamp BayBranch, contact:

Peggy Snuggs (813) 949–1585or

Mary Bryant Fath (813) 347–8693

“Coping With EDS”Patricia Damler RN; President, Chicago Area

Branch. Patricia has EDS Type IV

Daily issues of life often become complicated. What to do about thefollowing is a full–time job: work, homecare, transportation, medicalcare with the ongoing appointments, complex insurance, noinsurance, shopping, housework, relationships with family andfriends and mobility.

Many years ago, my mom told my daughter to try to think ofsomething good that went on that day. It seemed to stop her fromconcentrating on the negatives of her day to an overwhelmingdegree. She was coping with developmental disabilities. It made lifeso much easier for both of us when the first comment out of hermouth was not a negative one.

Try this with your friends and family. Set aside a time period to getthings off your chest, but don’t continually dwell on these issues.Understand that disabled people come in all forms; others may bedealing with issues that we have no awareness of until we listen.Dealing with limitations can often keep people from going throughthe stages of grief: denial, anger, bargaining, depression andacceptance. A sense of loss of being in control of your own life canbe very profound. Talking about your feelings is so important inorder to move through the stages. Don’t be afraid to reach out andget involved in a support group or seek professional stressmanagement. Not only will you help yourself, but you may evenbecome a support to someone you have never met before.

Together... We will

find a brighter day


Notes From Nancy...Nancy L. Regas R.N., M.S., M.F.C.C.

Executive Director

Pen Pal ProgramThe 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 FOUNDATIONPen Pal Program6399 Wilshire Blvd. Suite 510

Los Angeles, CA 90048

Name: ______________________________________________________________________

Address: ____________________________________________________________________ E–Mail Address: ________________________

City: _______________________________________________________________________ State: ________ Zip Code: ________________

Date of Birth: ________________ Sex: Male: ❐ 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: ❐ Either: ❐

If you do not have EDS, do you have a sibling or a parent with EDS? ...................................... Yes: ❐ _________ No: ❐

It's hard to believe that we are already in the second half of 1996;

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

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

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

big picture.

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

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

will inspire you as it did me.

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

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

the CP. The young man persisted until the coach gave in and said yes.

His desire and perseverance paid off as he ran his first race. The

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

man from doing what he knew he could.

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

it’s destination of Atlanta; as he passed his coach who was giving

him the thumbs up, the young man declared

as he held the torch high: “This is for you

coach.” He later told the reporter that his

coach was his best friend who was

always there for him.

My heart soared with this story. How often

do we let perceived limitations get in the way

from achieving our dreams? How often do we

discourage others by placing limitations on them? I was touched by

this young man (and by the coach who believed in him and cared

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

lives. Thank you Melissa and to this young man, and to all of you

who are not afraid to dream dreams and go for the gold. We can all

be coaches and dreamers ... not a bad way to spend a lifetime.

With Deepest Appreciation,

Nancy L. Regas

Executive Director

— Branch News —


Continued

AZ

CA

COFL

GAIL

ME

MA

MI

Three new branches have been chartered by the Board of Directors— Maine (formerly Waterville) , NortheastOhio (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 SeattleBranch. 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:

Phoenix, AZ: Debbie Krueger, (602) 978–1016.

Tucson, AZ: Robin Forsyth, (602) 579–8351.

San Francisco Bay Area, CA: At a meeting on July 20, at Santa Rosa Memorial Hospital, Dr GeorgeTriadafilopoulos, a gastroenterologist, spoke on gastrointestinal disorders. Matt White was elected as BranchSecretary, replacing Pat Helton. Next meeting will be on September 21 in the San Jose area, with Dr. Eric Ramosas quest speaker. Susan Burkett, President, (510) 934–5567. Please call (510) 947–2358 or e–[email protected] 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 groupsfor 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 dealwith, as well as members’ use of the area’s transportation network. Janet Neal, President (213) 294–7295.

Denver, CO: Pat Raynor, (303) 838–2211.

Tampa Bay Area, FL: On May 30, John A. Hisamoto spoke on physical therapy for EDS patients. The branch, incooperation with Shriners’ Hospital, is planning a Learning Conference for November (see page 3), open tomembers and health professionals from Florida and nearby states. Next branch meeting will be in August orSeptember. Peggy Snuggs, President (813) 949–1585.

Southeast Florida: Colleen Butcher, (407) 283–9499.

Atlanta, GA: April Leaman, (404) 875–4680.

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

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

Boston, MA: Robin Neas, (617) 767–4553.

Springfield, MA and Connecticut Valley: Sue Dion, (413) 667–5230.

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

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

Saint Louis, MO: Janet Dunn, (314) 645–4114.

Bergen – Passaic, NJ: Unable to work at forming a branch right now, Cathy Pizza offers support for EDSpatients via the telephone: (201) 440–2519.

MN

MONJ

For Information About Local Branches & Support GroupsYour organizer would appreciate a call from you expressing your interest.

If you would like to set up a branch in your area, write or callHarold Goldstein,

Director, Local Branch Organization,4701 Willard Ave., Apt 934,

Chevy Chase, MD 20815(301) 656–2053

— Branch News —


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 meetingis 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 experienceswith local physicians and hospitals (particularly about orthopedic problems) and dealing with insurancecompanies. 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. (Forinformation on the September meeting, call Margie Jones, (212) 744–7744).

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 UniversalistFellowship 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!.

Akron, OH: Katy George, (330) 253–0706.

Cleveland, OH (Northeast Ohio): Dr. Thomas P. Murphy spoke on TMJ and other jaw related problems inpatients with EDS at the June 29th meeting at Southwest General Health Center. A social gathering and cruise onthe Goodtime III will be held on August 24th. The next meeting will be October 19th at Southwest General HealthCenter from 1–3 p.m. The branch has drafted a set of by–laws, which, when adopted, may help other branches asthey draw up their own by–laws. Darlene A. Clarke, M.S.N., R.N. President, (216) 888–7317,E–Mail: [email protected]

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

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., atDoylestown Hospital. The branch hopes to get as a speaker a physician who is familiar with EDS. Roberta Kroll,(215) 794–8043.

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

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

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.

Calgary, Alberta: Linda Laverty, (403) 257–2776 .

Western Ontario: Christine Bell, Thedford Ontario is interested in organizing a branch.

NY

OH

OR

PA

VA

WA

WI

NC

CANADA


Announcing the Birth of...The Nancy Hanna Rogowski

Memorial DatabaseDear Members of EDNF:

There is a trilogy that I use with my clients and now I use it withmy students in school where I work: Where was I? Where am I?Where am I going? In those three questions, a road map iscreated for an individual’s personal lifelong journey.

Those same questions have to be asked of an organization, andthe Board of Directors has done just that in the last year. Thefirst question describes our birth and our evolution in findingpersons with EDS. The Foundation started as a dream in thehome of it’s founder, Nancy Rogowski.

The second question has assisted us in self evaluation sinceNancy’s death and has helped us transform the organizationfrom a person run to a board run foundation. It has moved usfrom Michigan to California. It has seen the formation of localsupport groups to band together to continue to search for thatbrighter day.

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

In this assessment, the board wants to pay tribute to NancyRogowski, the original dreamer for her vision that theFoundation could be created. Despite what people told her, shebelieved and didn’t give up; she instead made it her life’swork. In October, 1985, the EDNF was born and in 1993 adatabase was created with the purpose of research... to study thehistory of the disorder in order to truly find answers. Having thedatabase was not enough, however. Unfortunately we do nothave the funds to go the next step which is to secure acoordinator and activate the database. Therefore here is theboard’s dream.

In October there is an international genetics conference whereresearchers come from all over the world. We would like tosecure the funds ($25,000) to hire the coordinator by theOctober meeting so that Dr. Tsipouras can present the databasemanager at the conference. He has agreed that he will find away to do that if we provide the funding. The board has set thatas the foundation’s goal and to be constantly reminded of theoriginal dream, we are naming the database manager, TheNancy Hanna Rogowski Memorial Database. We areencouraging everyone to join the dream by raising the fundsnecessary to hire a database coordinator in order to “cut theribbon” on the database and send her sailing to find A BrighterDay.

Would you join with us in making October 1996 (EDNF’s 11thanniversary) the beginning of the transformation from dream toreality?

Thank you for your continued support,With deepest Regards,

Nancy Regas RN, MS, MFCCExecutive Director

Manuscript Guidelines for...

LOOSE CONNECTIONS1. Manuscripts should be voluntary contributions submitted for the

exclusive attention of Loose Connections.

2. The submitted manuscripts should be written in a clear andconcise manner. The author(s) should write in a style appropriatefor lay audience. The content of the manuscript must focus onEhlers–Danlos Syndrome, complications of EDS, currentresearch on EDS, or the day to day issues of living and copingwith EDS.

3. Manuscripts should preferably be submitted on a 3.5" disc inWordPerfect 5.1 or higher or an IBM compatible word processor.If this is not possible, the manuscript must be typed doublespaced. Handwritten manuscripts will be automatically rejected.

4. Fancy type fonts, italic, bold and underlines are not to beutilized. We will convert them to our printing style.

5. Manuscripts/discs should be sent to:The Ehlers-Danlos National Foundation6399 Wilshire Blvd., Suite 510Los Angeles, CA 90048

6. A 100 word abstract should be included that stimulates readers’interest in the topic and states what the readers will learn or howthey will be better off after reading the article.

7. Include a title/author biography page. The authors’ biographicinformation includes: name, credentials, position, professionalaffiliation, city and state. Example: Thomas Smith, M.D.,Professor, Department of Pediatrics, Case Western ReserveUniversity, Cleveland, OH.

8. Tables and figures should be placed at the end of the manuscriptafter the references. Tables must be numbered consecutively withArabic numbers and have a title at the top. Figures and tablesmust be cited in numerical order in the text.

9. Number pages consecutively centered at the bottom of eachpage. Do not justify the right margin. Do not use running headersor footers.

10. Subdivide the manuscript into main sections by insertingsubheads in the text. Subheads should be succinct andmeaningful.

11. References are placed at the end of the manuscript. Referencesare cited consecutively by number and listed in citation order inthe reference list.

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Repetitive MotionsContinued from page 1

Repetitive motions are one of the most common risk factors andare often blamed for many workers’ and hobby enthusiasts’injuries. In fact, there are numerous names for repetitive relateddisorders. These include repetitive stress injuries (RSIs),cumulative trauma disorders (CTDs), and overuse syndromes.Tendons, muscles, nerves, ligaments, blood vessels and bursae areoften affected. Carpal Tunnel Syndrome (CTS), sometimesreferred to as writer’s cramp, is perhaps the best known CTD. It iscaused by compression of the median nerve in the wrist area andcan occur from chronic irritation and swelling of the nearbytendons as well as direct pressure on the nerve. See section onMechanical Stress.

Most jobs, school, and home tasks involve some repetition. Thereis no known dose response relationship, so we do not knowexactly how much repetition is too much. However, we do knowthat there is a higher incidence of injuries in highly repetitivejobs. When other risk factors are also present, the risk increaseseven more. As a guideline, a motion is considered highlyrepetitive if the cycle time is less than 30 seconds. This meansthat more than one lift, step, exertion, or motion occurs in 30seconds.

Awkward PosturesMost EDSers are very familiar with awkward postures. In theworld of ergonomics, we actually have ways of evaluating theseverity of these postures. We all have a neutral posture that is theleast stressful and most powerful position for each of our jointsand 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 eitherstraight or at a right angle (90 degrees) with the wrist in line withthe forearm. For sitting postures, the upper body is the same aswith standing, but feet should be flat on the floor with legs atapproximately a 90 degree angle. Thus, neutral basically meansarms close to the body with elbows either straight or at a rightangle and the wrist straight. If the legs are involved, they tooshould be at a right angle, but the feet must touch the floor or afootrest. They should never be left dangling (for those shortpeople like me whose feet never seem totouch the floor!!!).

The further you move away from neutral, the greater the risk. Forexample, a severe risk for the wrists would consist of bendingthem as far forward or backward as they go, as well as rotated outto either side. So if you type and look down at your wrists, theyshould be in line with the forearm. If they are bent as far as theygo either backwards (extension), or forward (flexion) thatconstitutes a severe awkward posture. See wrist diagram. Ifhands are slightly bent or moved to the right while typing, that isa minor awkward posture.

The same can be said for every part of the body. The neck, forexample, should not be bent forward or backward or tilted to theside. The same goes for the back except you should also avoidtwisting motions. In addition, there is a special type of awkwardposture known as a static posture. This occurs when a body part isnot moving, but is still doing work. Thus, if you hold an object inyour left hand while using your right hand to work on it, the left

hand is subjected to a static posture. Likewise, holding your armsabove shoulder level requires several muscles to work even though thearms may not be moving. People recover much slower from staticpostures than dynamic movements. This is in part due to the buildupof lactic acid that occurs in the static body part.

The key to determining severity of an awkward posture is how far thejoint is away from the neutral position. Most of us will always havesome awkward postures in various joints. The idea is to reduce theextremes as much as possible and limit the amount of time the joint isnot neutral. Stay tuned for Part 2 in the next issue of Loose

Connections to find out how.

Forceful ExertionsWhat constitutes a forceful exertion? You may be surprised by theanswer. While it is difficult to use an exact number to determine theseverity of an exertion, simply holding a pen too hard or banging onthe keyboard can be considered forceful. Of course, if you lift 50pounds or more, that also constitutes a forceful exertion. For many ofus, lifting only 5 pounds may be forceful.

Computer programs are often used by ergonomists and biomechanicalengineers to analyze the stress on each of the joints. For any givenexertion not all joints suffer the same amount of stress. In depthanalysis to determine whether force is a risk factor is not reallynecessary in people with EDS because almost everything can end upbeing forceful. Thus, we should always strive to limit the amount ofweight we carry.

Anytime we use our smaller, weaker, muscles (like those in ourforearm commonly used when we pinch objects), will result in a moreforceful exertion than if we use the larger, stronger muscles in theupper arm. Likewise, the reason we lift with our leg muscles and notour back muscles is that leg muscles (especially the quadriceps) areone of the strongest muscle groups in the body. Back muscles

— Wrist Diagram —Neutral Wrist

“Normal Posture”Ulnar Deviation

“Awkward Posture”Radial Deviation

“Awkward Posture”

Flexion“Awkward Posture”

Extension“Awkward Posture”


generally are much weaker.Mechanical Stress

Ever leaned on your elbow and your entire arm went numb? That’swhat the risk factor mechanical stress is all about. Direct pressureon sensitive areas of the body. The most common places where thisoccurs is at the elbow, wrist, fingers and back of the knees (usuallyby or on the popliteal artery). Activities often associated with directpressure on nerves or soft tissues include leaning on a sharp deskedge while writing or typing, sitting improperly, wearingconstrictive clothing, using standard, poorly designed scissors,taking your frustrations out on a helpless stapler or hole punch andusing body parts as tools (hammers, in particular. Don’t laugh. Ithappens 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 orsegmental. Whole body vibration affects the entire body. The mainexposure for most of us would be riding in a car or truck unless wehappen to work on a vibrating platform. Fortunately, today’s carsand trucks have built–in dampening protection and provide muchsmoother rides. Segmental vibration occurs in one part of the bodyand is most common when using power tools.

Raynaud’s phenomenon, also referred to as Hand–Arm VibrationSyndrome or White Finger, is often caused by exposure to hand/armor segmental vibration. This disorder affects the small blood vesselsin the fingers and can cause significant pain and loss of feeling.Raynaud’s is characterized by recurrent episodes of finger blanchingdue to closure of the arteries in the fingers (digital arteries).Symptoms include “intermittent numbness and tingling in thefingers, skin that turns pale, ashen, and cold; and eventual loss ofsensation and control in the fingers and hands”.

Vibration has other effects as well. People who use vibrating toolsoften have to grip harder to maintain control, thus adding a forcefulexertion as a risk factor. You only have to watch a constructionworker using a jack hammer to see how vibration affects theirbodies.

Extreme Temperatures (Cold and Hot)Cold temperatures can often aggravate Raynaud’s and causemuscles to tighten up. Bundling up to keep warm can keep out thecold, but wearing layers of clothing can also decrease range ofmotion and increase the likelihood of injury. Gloves in particularcan be a substantial problem if they are not chosen carefully for thetype of activity and/or they do not fit well. See section on PoorlyFitting or Poorly Chosen Gloves.

Many people are also adversely affected by cold in various otherways. These include breathing problems, fatigue, dexterity, sensorysensitivity, and grip strength. For those of us who live in arcticweather, we are also subjected to icing conditions which impair ourcoordination even more than normal and can result in near misses,severe slips, and falls. Both can cause substantial injuries. Needlessto say, we should limit the amount of time in very cold temperaturesand if we do venture outside, we must be properly clothed and have

Views expressed herein are only those of the authors, and should not be construed to represent theopinions or policies of the Ehlers–Danlos National Foundation and it’s elected officials

some type of support.

Extreme heat, especially in conjunction with high humidity, istough on anyone. Disabled people and the elderly tend to beaffected even more. Besides the possibility of heat cramps, heatexhaustion, or heat stress, hot and humid weather can be extremelyfatiguing. Avoid very hot weather whenever possible.

Some people with EDS appear to be sensitive to the direct sun andshould try to avoid or limit exposure. Even those that don’t haveEDS should keep in mind that certain medications, such astetracycline, can cause sun sensitivity even in “normal” people.

Poorly Fitting or Poorly Chosen GlovesGloves are often necessary and can be protective. However, whenwe choose the wrong gloves or they do not fit well, they becomepotential risk factors or stressors. Most gloves add bulk and canactually increase the amount of force necessary to do a task. Forexample, try wearing gloves while writing. Even thin ones can causeyou to use more force than without gloves. Likewise, gloves caninterfere with the ability to feel and therefore, can throw off yourability to judge how much force is needed. If gloves are too small,they can actually cut off circulation and increase fatigue. If they aretoo 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 adaily basis are repetitive motions, awkward postures, forcefulexertions, and mechanical stress. These also tend to be moresignificant risk factors than the other three mentioned above.Remember, the more risk factors present and the more severe eachrisk factor, the greater the possibility of injury or discomfort. Thus,it is imperative to try and avoid, reduce, or eliminate the mostsevere risk factors and to lessen the number of total risk factorspresent. Does this seem like a daunting task? After all, how can amere mortal reduce or eliminate problems as diverse as repetitivemotions, awkward postures, forceful exertions, mechanical stress,vibration, extreme temperatures, and ill chosen or poorly fittinggloves? Stay tuned. Same newsletter. Next issue. Why? Because thenext issue’s article will answer the all important question: How tocontrol these risk factors in the home, at work, and in school.

References:

U.S. Department of Labor, Occupational Safety and HealthAdministration, Ergonomics: The Study of Work, 1991, pp. 1–19.

Vern Putz–Anderson, Cumulative Trauma Disorders: A Manual forMusculoskeletal Diseases of the Upper Limbs, 1988, Taylor &Francis, pp. 1–25.

Thomas J. Armstrong, “Ergonomics and Cumulative TraumaDisorders,” Hand Clinics, Vol. 2, No. 3, August 1986, pp. 553–565.

U.S. Department of Labor, Occupational Safety and HealthAdministration, Ergonomics Program Management Guidelines forMeatpacking Plants, 1990. pp. 1–10.

As We Go Rolling Along...By Florie Brizel

Lately I’ve been having trouble getting around.Actually, for the last year and a half, my hiphas a mind of it’s own. I had surgery whichworked for awhile, but I’ve been back oncrutches for about two months now. To top itoff, I injured my wrist from using the crutches,so I haven’t been able to do much of anythingin my normal fashion. Sound familiar to someof you? I hope not, but I know many of youunderstand all to well.

All in all, I’d say I’ve been a bit nonplused bythe whole cycle of events, and I’ve beenscrambling to figure out how to cope with mynew circumstances. While many people in myimmediate circle of friends and family haveencouraged me to get a wheelchair (motorizedor otherwise), I’ve been having a hard timetrying to bend my mind around that idea. Neverin my life did I imagine I would need awheelchair. It doesn’t jive with my mentalpicture of who I am and how I am. Yet for thepast 18 months, I’ve limited my social activitybecause I dread the logistics of getting to andfro; I miss my friends and they miss doingthings with me. Being even vaguely realisticabout my situation, I know I would now benefitfrom mobility assistance.

But even when thinking about my life in awheelchair is kind of scary, depressing , nervewracking and expensive. What will I have tochange in order to be mobile? What about mycar? Will I need a companion to help me? Whatkind of chair do I need? How do I shop forone? This has been very hard for me and takena lot of guts, energy and courage, so I thoughtI’d share my thoughts and experience with you.You never know when it might prove useful.Herewith a few hints and tips:

If you think you might need a wheelchair, shoparound before you actually need it. Plan ahead.Psychologically, it is much easier to look for achair when you can walk out of the store thanwhen you will need to roll out. See what is outthere, check out the costs, investigate theramifications. Give yourself time to adjust tothe idea and reality of new mobility.

When shopping for a wheelchair, don’t goalone. Emotionally it can be very draining.Take a friend or someone who will besupportive. Someone who can help you keep agood attitude about the whole thing. Someonewho will take you out to lunch afterwards!

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


family want to do withme. But the funny thingis, when I asked myfriends if they wouldmind pushing me in awheelchair (because Iwas feeling like it wasasking them to help meyet again), they were so excited because itmeant I could and would be doing more withthem. Silly me. Good thing I asked.

Find a wheelchair supplier who is sensitive towheelchair users who have unusualcircumstances, such as ours. One who will notsay cruel things like “YOU need a wheelchair?You are so young!” or “What happened toyou?” How do you find a place like this? Ifyou’re out shopping and see a friendly lookingperson in a wheelchair, kindly ask that personwhere she goes for her wheelchair needs andservices. Ask if the people there will besensitive, etc. I did this and people wereunbelievably helpful. I also got great localinformation.

Look for a chair the same way you would lookfor a car, or couch, or bicycle. Think about yourimmediate needs and consider your long rangeprospects. Determine whether you need amotorized or a manual model. Shop around.Look at lots of chairs. Sit in them, wheel about.Compare prices. Try to negotiate the best dealpossible. Ask about service.

Wheelchair suppliers come in many forms. Youcan buy direct from a medical supply facility.Or there are wheelchair “brokers” ormiddlemen, who come to your home,demonstrate for you in the privacy of yourliving room and handle all of your serviceneeds directly. Take the time to investigate.Each has advantages. Some options may bebetter if you live in a rural area rather than ametropolitan location. Each city and town willbe different, so check it out.

If you have insurance, ask your claims adjusterfor purchasing information too. Insurancecompanies know the local suppliers and theylike it when they know you are working withthem to minimize costs.

Finally, remember this: the whole idea behind awheelchair is to get you mobile andindependent once again. In the words ofMartha Stewart, “It’s a good thing”.

In Loving MemoryOf Our Daughter,

Nancy Hanna Rogowski

On this first anniversary of her death,we, her family, wish to say

how very proud we were of heraccomplishments in founding

Ehlers–DanlosNational Foundation

She lived only for a short time,but in her thirty–eight years she showed

courage and determinationin her battle with E.D.S.

Her dream in the twelve yearsafter her diagnosis was how could

she help others by support,knowledge and hopefully research.

This she accomplished!

She will be rememberedby her family and

will live in our hearts forever.“We Love You Nancy”

Her Family

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 becauseI 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 pleaseI 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 feelsto be sitting here between these wheels?

Can you remember back that farWhen 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.

My New Set Of WheelsBy Darlene Uggen



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1996, Volume 11, Number 2,“The Medical Partnership: How to Work as a Team With Your Doctor” _____________ _____________

1995, Volume 10, Number 1,“Mandibular Joint, Orthodontic and Dental Findings In EDS” _____________ _____________

1994, Volume 9, Number 4,“Psychosocial Functioning In The Ehlers–Danlos Syndrome” _____________ _____________

1994, Volume 9, Number 3, “Genetic Information and Health Insurance” _____________ _____________

1994, Volume 9, Number 2, “Heritable Disorders of Connective Tissue andDisability and Chronic Disease In Childhood” _____________ _____________

1994, Volume 9, Number 1,“Official Launch of the Ehlers–Danlos Syndrome Database Manager” _____________ _____________

1993, Volume 8, Number 4,“Dental Manifestations and Considerations InTreating Patients With Ehlers–Danlos Syndrome” _____________ _____________

1993, Volume 8, Number 3,“What’s Wrong With This Patient?” _____________ _____________

1993, Volume 8, Number 2,“Gastrointestinal Considerations in People Suffering From Ehlers–Danlos Syndrome” _____________ _____________

1993, Volume 8, Number 1,“Chronic Pain Management Treatment Facilities” _____________ _____________

1992, Volume 7, Number 4,“Perspectives on Pain History and Current Status” _____________ _____________

1992, Volume 7, Number 3,“Use of Mesh to Prevent Recurrence of Hernias” _____________ _____________

1992, Volume 7, Number 2,“Fibromyalgia Syndrome” _____________ _____________

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1991, Volume 6, Number 4,“Ehlers–Danlos Syndrome Type VI” _____________ _____________

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1991, Volume 6, Number 2, “Ehlers–Danlos Syndrome” _____________ _____________

1990, Volume 6, Number 1,“ Passport to Seattle” _____________ _____________

1990, Volume 5, Number 4,“The Emergency Room and Ehlers–Danlos Syndrome” _____________ _____________

1990, Volume 5, Number 3,“A Survey of Patients With Ehlers–Danlos Syndrome” _____________ _____________

1990, Volume 5, Number 2,“Podiatric Management of Ehlers–Danlos Syndrome” _____________ _____________

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Hagen, K. (1993).Understanding Ehlers–Danlos Syndrome. Dermatology Nursing, 5(6), 431–434. _____________ _____________

Gillespie, A. (1992, Fall).What’s Wrong With Me? Dimensions, pp. 8–12. _____________ _____________

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Congressional Health Reform Chairpersons. I wrote to the StateInsurance Department, to every member of theHMO Board of Directors as well as anyoneremotely connected with health carethroughout the state of New York. Mypremise in each letter was the same – howcan an insurance company arbitrarilydictate the health care of a member—(only an ID and a claim history tothem)? I even sent copies ofthese letters to the HMO’sconsulting MD athis private office.

I was fortunate to have provoked the interest of one particular StateSenator who intervened repeatedly on our behalf. The HMO finallyhad to answer to someone!

I am happy to say that we finally won our battle and that ourwhopping $250 consultation fee was covered. I can only imaginewhat it cost this HMO in man hours, paperwork and aggravation. Itwas surely much more than Dr. Tsipouras’ modest fee.

The reason which I write this letter is simple, I want others to knowthat they do not have to be denied proper care or evaluation becauseof the special (money) interests of a health insurer. These stringent,unreasonable demands imposed upon members of HMO’s can bedealt with by means of persistent, organized action. I hope thatsomeone may be helped by our story and that it offers at least a basefrom which the next HMO victim may work.

Sincerely.Mary Bracer

Letters To The Editor


Dear Editor:

After consulting with many doctors, our daughter Lindsay wasfinally diagnosed with Ehlers–Danlos Syndrome. Even though weconsulted with the best geneticists at our local Buffalo Children’sHospital, none of them could tell us which type EDS Lindsay had.

After much research, we finally learned about Dr. Petros Tsipouras inan article from Loose Connections. We decided that it would be wiseto have Lindsay evaluated by Dr. Tsipouras.

At this particular time, our health insurance was through a verypopular local HMO and we naturally were expected to stay withinthe confines of the HMO network. The HMO preferred that we stayin the network and found us what they believed to be our best localauthority.

We were secured an appointment with a rheumatologist generated bythe consulting MD who worked for the Medical Review Departmentof the HMO. He assured us that this physician would give us theanswers which we were looking for.

After waiting several hours in a waiting room filled with crippledgeriatric patients, it was finally our turn. What a waste of time! Shecould not tell us anything which we didn’t know and I came awayfrom this appointment greatly disappointed. Our HMO surely wastedtheir money in this instance.

After this, I continued to read as much as I could and after severalmonths, we decided it would be wise to again pursue an appointmentwith Dr. Tsipouras. I again asked the pediatrician for an out ofnetwork referral. At this time he refused to do this. I was very upsetto learn that his reason for not pursuing the matter was because hewas afraid of jeopardizing his “good standing” with this HMO.Needless to day, we found another pediatrician—one who was notafraid to fight for her patient. Our new pediatrician followed properprotocol and tried to obtain this special referral for us. Again wewere denied. Again the HMO intervened and said that they found alocal MD who could provide us with answers. The HMO doctorarranged for an appointment with a dermatologist who wouldperform skin biopsies on Lindsay and that would be the answer. Weacquiesced and agreed to keep the appointment which was made forus. (This new pediatrician guaranteed us that we would have to jumpthrough the proverbial hoops). Days before this scheduledappointment, the dermatologist’s office called and canceled ourappointment and told us to consult the HMO. Apparently thedermatologist knew she could not give us the answers which weneeded and informed the HMO to cancel our consultation. The HMOwas not happy and neither were we. At this point, I scheduled anappointment with Dr. Tsipouras (it was 6 months away, but I wasglad to have it).

I informed the HMO of our appointment and was told that I had noright to make such an appointment without prior approval. Theycertainly would not pay for this service. Being sufficiently angeredby this point, I assured them that I would not disappear and that Iwould become their worst nightmare—a mother with a mission.

I appealed via their proper procedure and again was denied. I waseven informed that if I went to the media or consulted a lawyer that itwouldn’t do me a bit of good—others had done it before. I wasissued a member advocate (I use this term loosely) and it was hisidea that I go to Connecticut and pay the expense out of pocket. Nowit had become a matter of principle.

My next step was to visit my local alderwoman’s office and obtainthe names and addresses of anyone in the State Capitol connectedwith health care reform. I wrote letters to the State Senate and

Dear Editor:

My name is Karen. On January 31, 1996 my daughter Amanda, age10, was diagnosed with Ehlers–Danlos Syndrome, possibly type II.She dislocates both her shoulders and at the present time her rightknee cap is slipping on her. She has hyperextensible joints but herskin is not able to be pushed away at the present time. Her larynxbegan collapsing last November. The doctors thought it was stressinduced asthma. She is very involved in ice skating and has beendoing so since she was 3 years old. Her doctors told me that she wasvery lucky that we started her at such a young age as she hadstrengthened her leg muscles tremendously. She is no longer allowedto do her jumps, so she is now learning ice dancing and doing a lot offootwork.

Since I found out about Amanda’s condition I have worked veryclosely with Linda at the National Foundation and Peggy Snuggs,President of the Tampa Bay Chapter. They have pulled me throughsome very hard times. Thank you both very much.

On May 18, 1996, I held a square dance pot luck dinner fund raiserin Copper City, Florida for the Patricia Wood Research Fund. I aminvolved with a fantastic square dance club that helped me put thisfund–raiser together. We worked on it for 2 months and our callerprinted up all our advertising and door prizes. I was also able to getdonations from local merchants and restaurants in the area. TheAmerican Legion Hall in Cooper City donated their hall for anominal fee. We had over 200 people in attendance and raised$3,700. I ended up spending less than $200 which included the hallrental. If you would like more information regarding this fund–raiser,please contact me through EDNF.

Karen Martinez


Memorials & Honorariums We’re On the Internet& The World Wide Web

Contact theEhlers–Danlos National Foundation

at our E–mail address:[email protected]

Ehlers–Danlos SyndromeWorld Wide Web

Home PageA wonderful sitewith great sourcesof informationabout EDS,articles of interest,medical resources,and related topics.

http://www.phoenix.net/~leigh/EDS

To sign up for the on–line supportmailing list, send an E–mail post to eds–[email protected] with the subjectas subscribe, no note in the body isnecessary. To receive a digest version ofthe mailing list, send an E–mail post toeds–d–[email protected] with thesubject subscribe, no note in the body isnecessary. It’s as easy as that to getconnected with EDSers. Please surf byand join us, we are a very supportivegroup!!!

Thank YouThe publisher would like to thank:

Jim & Debbie at PremierImpressions in Strongsville, OH.

J. P., Alan and Brenda at J. P.Graphics, Inc. in Berea, OH.

For their expert assistancewith our newsletter.

Bone Metabolism inEhlers–Danlos Syndrome

Research Study

Study requires participants to haveEhlers–Danlos Syndrome and be

willing to have measurements of bloodand density done at the

Clinical Research Center (CRC) at theUniversity of Tennessee in Memphis, TN

For information,please contact:Dr. Carbone at

(901) 448–5743

1995 Memorial and Honorariums

As referenced in the last newsletter, the memorials and honorariums for 1995 still have notbeen located. Linda Neumann–Potash, who runs the day to day operations in our newoffice, has searched diligently through all the records and hardware we obtained from theMichigan office.

If you know a donation was made to a particular person and from whom and would likethose 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 fromthese last two newsletters, we consider memorials and honorariums an important part ofour communication with our members.

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

In Memory of Nancy Hanna RogowskiF. Mitchell Cummins, M.D.Marjorie Klingaman

In Honor of Bruce & Linda PotashBarry Pinsky & Linda SharlinIsabell & David Novak

In Memory of Millie Gaspin,beloved sister of Bernard Chapnick

Lil FeingoldRisha Shem Tov

In Loving Memory of the Best Mom –Helen L. Rafaill

Nancy & Louis Regas

In Memory of Mrs. Florence PawloskiNancy HillWilliam K. GardnerJohn & Lori SchwabMichael & Janice PawloskiMitsubishi MotorsKris Shimamoto

In Memory of Ray LippenbergerMargene & Philip WeissWilliam ThompsonMissy SteinhaverKen TaylorClaudia SpeakmanMartin & Lucille ZitzR.A. & Beulah Horn

In Memory of Rick WondersMichael Doulton and FamilyMr. & Mrs. Daniel HicksThe Piper FamilyJohn Papez Insurance AgencyConnie DavisLynne Erlich

In Loving Memory ofLoyola “Toni” Buckley

Ruth LeVienGary & Janice GumpPhilip JohnsonEvelyn BrownArthur ReilyHarold DaughteryCommittee T1–TelecommunicationsGate–Net Associates, INCWilliam & Adelaide Von AlvenVerilink CorporationPamela Popken–HarrisEllie & Al ManthosMarlene Keyak & Dawn Dearstyne HalnAlice ReidStan & Cathie ReyJames EitelHoward Brainen &Marsha KirschbaumThe Staff at Custom PrintingTeresa & John HuftJudy, Tom & Lorien ReidBetty & Gary GoulartRobert & Mary–Ann OrrWilliam & Imedlada HamptonPercy PoolFriends & Collegues of CrystalSemiconductor CorporationSusan AldenJoe and Donna SantoItron, INCRaymond & Margaret EidenJulie AldenKaren CurtisMeryl BrutmanWilliam & Bernice SankoRebecca DotyJoan and Richard van Gelder

Ehlers–Danlos National Foundation6399 Wilshire Blvd. Suite 510

Los Angeles, CA 90048(213) 651–3038

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Name: __________________________________________________________________ Date: _____________________________________

Address: ________________________________________________________________ Sex: F: ❑ M: ❑ Birthdate: ____________________

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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: ❑ Renewal? 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+

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❑ Check here if you are donating to the foundation, but are not interested in receiving our quarterly newsletter, “Loose Connections”.

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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.

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If you are interested in corresponding with other families, please sign the release below. Please note that only your name, address and phone

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❑ Check here if you'd like the name and address of three other members in your area to communicate with.

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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.


Together... We WillFind A Brighter Day

EHLERS–DANLOS NATIONAL FOUNDATION6399 Wilshire Blvd. Suite 510Los Angeles, CA 90048

ADDRESS CORRECTION REQUESTEDEhlers–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 FOUNDATION6399 Wilshire Blvd. Suite 510

Los Angeles, California 90048

Phone: (213) 651–3038

FAX: (213) 651–1366

➪

New Address

and Phone #s

EHLERS–DANLOS NATIONAL FOUNDATION6399 Wilshire Blvd. Suite 510Los Angeles, CA 90048

ADDRESS CORRECTION REQUESTEDEhlers–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 Foundation 6399 Wilshire Blvd. Suite 510

Los Angeles, California 90048

Phone: (213) 651–3038

FAX: (213) 651–1366

NON–PROFIT ORG.U. S. POSTAGE PAID

PERMIT NO. 376BEVERLY HILLS CA 90210

Documents

Loose Connections (May 1996)