Loose Connections (December 1996) by Mark Martino

Vol. XI, Number 4 The Official Communications Link Of The Ehlers–Danlos National Foundation 6399 Wilshire Blvd. Suite 510 Los Angeles, California 90048

December, 1996 (213) 651–3038

Ergonomics: Controlling Risk Factors and Potential Stressors By Meryl B. Brutman, MPH - EDNF Board Member and Founder of Chicagoland Branch. Meryl has EDS type III. This is the second of a three-part article on the recognition, evaluation, and control of potential risk factors and stressors that can lead to increased injury, discomfort, and/or fatigue. Part 1 introduced guidelines to recognize and evaluate each of the seven potential risk factors or stressors. Part 2, presented below, explores the variety of control methods available to reduce, eliminate, or avoid awkward postures, mechanical stress, and poorly fitting or poorly chosen gloves, in the home, workplace, and school. Part 3, to be presented in the next issue of Loose Connections, will discuss control methods for the remaining risk factors - repetitive motions, forceful exertions, vibration, and extreme temperatures.

consuming to implement. It is not always feasible to design all potential risks and stressors out of every situation. In these cases, administrative controls can be quite effective. They can also be used as interim control measures while engineering plans are being implemented.

For ease of discussion, examples of general control measures for each risk factor will be discussed first. Please keep in mind there is no such thing as just a repetitive motion or forceful exertion control. Many of these control measures overlap. The ideal is to choose a method that eliminates or reduces as many risk factors as possible. Remember, creativity counts. It doesn’t matter what the modification looks like as long as it accomplishes the goal of reducing risk. As an Control measures can be divided into two example, the task of assembling a desk often main types: administrative and engineering involves screwing nails into pieces of wood. controls. Some people add a debatable third This job contains several risk factors, type, Personal Protective Equipment (PPE), including repetitive motions, awkward which includes back belts (technically postures, forceful exertions, and mechanical abdominal belts) and other bracing/support stress. Yet, with one simple control measure systems. Administrative controls require switching from a manual screwdriver to a someone’s conscious decision. Examples are: powered one - all four of these risk factors increasing the frequency or duration of rest can be reduced. But beware! Before making breaks, altering shift/break schedules, job any modifications, weigh the pros and cons (task) rotation, job enrichment or of switching methods or tools. Oftentimes, a enlargement, exercise, and training. control measure can actually add an Engineering controls usually involve redesign additional stressor while eliminating or reducing other stressors. In the example of either the job, tool, or workspace and are above, switching to a power screwdriver built into the product or system. Little additional effort is required by users thereby reduces many risk factors. However, if the increasing the likelihood the control measure wrong tool is chosen, vibration can become a will be effective. For this reason, engineering new risk factor. Of course, trading four risk factors for one is a pretty good deal. Just use controls are preferred over both your common sense. There are no right or administrative and PPE controls. However, wrong answers. these controls are often very costly and time

Awkward Posture Controls There are many simple, inexpensive ways to control awkward postures. They typically fall into three categories: 1) Change the orientation of work. 2) Change the work method. 3) Change, modify, or redesign the tool. Oftentimes, control measures from all three of these categories are necessary. Let’s start with a student writing on a desk, an employee typing on a computer, a parent cooking dinner, and an assembler gluing parts together. While these may seem like very diverse tasks, they all use worksurfaces that may cause problems if they are not at the right height and oriented properly. Different tasks require different workstation setups. However, they all have similar reference points. One of the most common reference points whether the task is done seated or standing is known as elbow height – height of elbow from floor when elbow is in a neutral (90 degrees) position. This serves as a guideline to determine the height of the workstation. For instance, the majority of work is done 2-3 inches below elbow height. This includes tasks like writing, some computer work, stirring dinner, and light assembly. Thus, all of our examples above can use this guideline to setup their workstations. What if our assembler works on extremely small, delicate parts which require great precision? The guideline changes. Fine, precision work is usually done at or slightly above elbow height.

Continued Continued on on page page 8. 8. Views expressed herein are only those of the authors, and should not be construed to represent the November, 1996National EDNF — Page 1 and it’s elected officials opinions or policies of the Ehlers–Danlos Foundation

LO OS E 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 Linda Neumann–Potash, R.N., M.N.

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

Vice President Karen Czerpak, R. N.

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

Secretary Meryl B. Brutman, M.P.H.

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

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.

The Chair’s Corner Rebekah L. Sheyda Chair, Board of Directors It is hard to believe that the weather has once again turned cool. As the seasons have changed, so has the Ehlers-Danlos National Foundation. We have come a long way in the past year. We have moved from Michigan to California. We have undertaken a major reorganization and we have seen the continued emergence of the local branches. The way has not been easy. Every step has been hard fought. Thank you for your part in the progress. We all owe a very special debt of gratitude to Nancy Regas for her leadership over the past decade and more. Nancy, who has most recently served the Foundation as Executive Director, has assumed the position of President. In this role, she will, among other things, represent the Foundation to the public. Thank you, Nancy, for being a pillar of strength for the EDNF and for helping us reach for brighter tomorrow. As you see from this issue of Loose Connections, many Board members have undertaken new roles in order to better serve the Foundation. Nancy Regas has passed the mantle of Executive Director to Linda Neumann-Potash. Linda currently runs the day to day operations of the Foundation. She will continue to do so until the Los Angeles office is staffed (please see the article by Nancy) and Linda can assume more long-range responsibilities. You will not be surprised to learn that she stays busy interacting with many local and national organizations. We are in capable hands. Karen Czerpak has also been with the Foundation for many years. After years of faithful service as Secretary, Karen has assumed the Vice Presidency. Meryl Brutman steps into the Secretary’s position. Harold Goldstein continues in his role as Treasurer/Director of Local Branches and Jerry Rogowski will continue to serve on the Board of Directors. Please take time to thank each of these people. They volunteer their time, selflessly giving of themselves for the betterment of the Foundation. As we continue our growth, thank you for standing with us. The last issue of Loose Connections ran into difficulties at the printers and was mailed late. These, and other types of growing pains are not enjoyable for anyone, but they do let us know that we are not standing still - we are moving. Come with us as we press onward to a brighter day.

— Fund Raiser — Greeting Cards

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.

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)

November, 1996 EDNF — Page 2

Introducing

Linda Neumann-Potash Your New Executive Director by Karen Czerpak You’ve read the headline and you’re now wondering why Karen Czerpak is introducing Linda. Well, Linda subscribes to the school of thought that thinks it is impolite to “toot your own horn”. I subscribe to a different thought process altogether-”give credit where credit is due”. Linda became a member of EDNF in 1990. She has EDS type III. In 1992, the Board of Directors received a resume from Linda along with a request to serve as a board member. I was on the Board at the time and remember thinking that whoever this person is, she sure does volunteer a lot of her time. She has a Master’s Degree in Nursing and specializes in pediatrics. Her volunteer work was with the Cystic Fibrosis Foundation, Alpha Tau Delta (a national fraternity for professional nurses), and the Special Olympics, to name a few. Thankfully, once she received her diagnosis of EDS, she channeled all her energies into her new found home, EDNF. She has worked diligently ever since then to move EDNF in a positive direction. Those of you who attended previous conferences may remember Linda conducting an aquatics class to introduce members to the challenging yet pain relieving properties of the water. She brought a professional instructor to San Diego so that more knowledge could be passed on to you our members. She brought many other speakers to our conferences. It seems that anyone who treats Linda as a patient somehow gets caught up in her enthusiasm and ends up volunteering their time on our behalf. Her devotion to EDNF is so deep that it can truly be described as infectious. In 1995, after the death of our founder, Nancy Rogowski, the Board found themselves in dire straits. Nancy had pretty much run the entire organization on her own, with the help of her husband and her parents. We had no one in Michigan that could just pick up and smoothly transition EDNF into someone else’s hands. Through a deep sense of devotion to the organization that had provided her with comfort, information and new friends, Linda took a leap of faith and decided to quit her job as a pediatric nurse and take on the duties of running the Foundation. As all of you have felt our growing pains over the last year, Linda experiences this on a daily basis. Imagine picking up where someone left off, but that someone was not available to give you pointers on how everything should be done. Linda works 4 days a week in our new Los Angeles office. We have no payroll, so this is all done out of the goodness of her heart and a genuine love and concern for all our members, as well as a sense of responsibility to Nancy Rogowski.•; Linda wanted to make sure that Nancy’s dream would not die. If you call the office, it’s Linda that answers the phone. When you send in your dues, it’s Linda who maintains your membership file. If you post a question on our on-line support group bulletin board, Linda researches the answer and gets the information to you as quickly as possible. She deals with the accountants, the IRS and networks with other organizations similar to ours in order to find the best way to do things. These are just a few of the tasks involved in the monumental day to day operations of EDNF. She is literally on the front line, day after day. I’ve never done the job, so I could never truly do justice in describing all that goes into it. Just know that your new Executive Director is selflessly giving her talents and toil to make a brighter day for all of us. I applaud her efforts thus far and am proud to not only work with her, but to call her friend. Join me in welcoming her to her new position and applauding her efforts.

Manuscript Guidelines for...

LOOSE CONNECTIONS 1. Manuscripts should be voluntary contributions submitted for the exclusive attention of Loose Connections. 2. 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. 3. 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. 4. Fancy type fonts, italic, bold and underlines are not to be utilized. We will convert them to our printing style. 5. Manuscripts/discs should be sent to: The Ehlers-Danlos National Foundation 6399 Wilshire Blvd., Suite 510 Los 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 how they will be better off after reading the article. 7. 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. 8. 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. 9. Number pages consecutively centered at the bottom of each page. Do not justify the right margin. Do not use running headers or footers. 10.Subdivide the manuscript into main sections by inserting subheads in the text. Subheads should be succinct and meaningful. 11.References are placed at the end of the manuscript. References are cited consecutively by number and listed in citation order in the reference list. 12.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. 13.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. 14.Surveys submitted for publication in Loose Connections must include a letter showing IRB (Institutional Review Board) approval from the researcher’s associated institution. 15.Loose Connections reserves the right to edit all manuscripts to its style and space requirements and to clarify the presentation if necessary.

Together... We will find a brighter day November, 1996 EDNF — Page 3

Notes From Nancy... Nancy L. Regas R.N., M.S., M.F.C.C. President, EDNF If you noticed from the heading, I am no longer serving as Executive Director and have taken the office of President. I stepped down from the executive position as I felt Linda Neumann-Potash needed to assume that role since she is in the office and running the day to day operations. It has been my pleasure to serve as Executive Director for the last year and I thank you for your support. In light of that, it is appropriate and vital that I present you with a vision for the Foundation. The Chesire cat in Alice in Wonderland is quoted as saying, “If you don’t know where you are going, you’ll end up somewhere else”. I believe in that very strongly and for that reason proposed this outlook for the Board at our October meeting. We have been very good over the last year illuminating the research component of the Foundation and the need to activate the database. You have understood that and know that the only way to understand EDS is through research. Our dream for a brighter day lies in that pathway. We have not, however, done a very good job realistically communicating what it takes to run a national foundation; at any rate, now is the time. To have an efficiently run office, it takes more than one person. Currently, Linda is attending to the office, but is in desperate need for volunteers to come forward. If she can delegate to others, necessary but routine jobs, she can focus on larger jobs. EDNF needs a staff. We need to set our long range goals, a Chief Administrative Office to run the day to day activities of the Foundation, an Executive Secretary to carry out those vital tasks and a Public Relations Officer to get EDNF’s name out in the public sector and assist us in obtaining major funding. These three people, would allow the Executive Director to oversee the entire process and to see that the policies established by the Board of Directors be carried out. The Executive Director also brings to the board recommendations to increase the scope of the Foundation as a result of the day to day operations. A Board of Directors should not operate a foundation. That job needs to be completed on a daily basis, at the site of the Foundation headquarters (Please note that the vision transformed into the present

creates the priority of a secretary to work with the executive director). Although the heart of an organization is a solid, active volunteer base, there needs to be a core of paid staff to maintain the direction of the Foundation. This piece of reality translates as a need for money. We need to raise money for research and raise money to operate the office, which means staff. Mailings, phone calls, newsletters, bookkeeping, accounting, filing legal papers, fax machines, etc., do not happen without the necessary funds. This kind of money is realistically not going to come from a bake sale or a car wash. Operating expenses take much more than that. We have to reach out to the business community and create a philanthropic link. The other dimension of growth is the Board itself. When the Board completes the major portion of the transition of leadership and location, we will be looking to increase the number of directors. Not only do we need skills and intelligence of members to serve at the national level, but we need people outside of the Foundation who wish to be a part of a humanitarian cause and share their talents in a volunteer capacity. To give of oneself, is to fulfil one’s purpose in life. Those are the items I needed to share with you. Each piece of the puzzle is crucial to the completion of the picture. From the individual meeting with a doctor, to a local branch holding a fundraiser and a community awareness function, to the researcher who sits in the laboratory trying to unravel the unknown, to the Board creating policies which will run an organization efficiently, effectively and with integrity, to an office which keeps the wheels in motion...that is the transformation of the dream into reality. Only with a vision, only together will we find a brighter day. With Much Hope, Nancy

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 return it 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: ❐ November, 1996 EDNF — Page 4

Either: ❐

— Branch News — By Harold Goldstein Director, Local Branch Organization All nine of our chartered branches have been granted nonprofit, tax–exempt status by the Internal Revenue Service, in a letter received by the foundation at the end of September. This means that donations to these branches are deductible as charitable contributions. A new service to the Foundation and its members is being pioneered by the Tampa Bay Branch: a Learning Day, November 15-16, at which they will present speakers on medical topics, workshops, a lunch and a Friday evening social reception. Members and friends from all of Florida and from neighboring states will be welcomed. The one–day format and the short travel distance make such regional meetings easier to attend for many members, and therefore a good supplement to national conferences. Branches: here’s something you can do for your neighbors! Another pioneering step was taken by the Maine Branch, which, in October, conducted the first underwater meeting in EDNF’s history. To Seattle, which proudly calls itself the “loose and lively” branch, Samantha Paine-Paradis, the Maine President, says, “Hey, guys, how’s this for loose and lively?” All right: which branch will pioneer the first regional underwater conference? Here’s where branches are being organized, and their branch presidents or volunteer organizers:

AZ Phoenix: Debbie Krueger, (602) 978-1016 Tuscon: The Rehabilitation Department of Eldorado Hospital has offered support. Robin Forsyth, (602) 579-8351

CA Southern California: At a branch meeting on September 8th, Dr. Roland Jefferson, a psychiatrist, talked on “Strategies for Coping with EDS.” The San Fernando Valley support group met on September 29. Janet Neal, President, (213) 294-7295 San Francisco Bay Area: The branch has set up committees to work on future programs; one committee is identifying physicians in the area who are experts on various aspects of medicine related to EDS. At the November 16 th meeting, Barbara Uggen of the Seattle Branch will show a video on the human genome project. A Christmas party is being planned. Susan Burkett, President, (510) 934-5567.

CO Denver: Pat Raynor, (303) 838-2211 CT Connecticut & Western Massachusetts: A meeting is set for October 26 at the UCONN Health Center, Farmington, CT. Susan Dion (413) 667-5230 and Tara Leary (860) 667-2079

FL Tampa Bay Area: Several workshops were held to plan for two major activities of the branch: the golf tournament, and Learning Day (see above). The Golf Tournament, held on September 28, was a great success: a net profit of close to $3,000 was realized, some of which will defray costs of the Learning Day. Peggy Snuggs, President, (813) 949-1585 Southeast Florida: Colleen Butcher, (407) 283-9499 Orlando: Pamela Williams, (352) 735-2735

GA Atlanta: A meeting is set for October 19th at the Avis G. Williams Branch of the DeKalb County Public Library System. April Leaman, (404) 875-4680

IL Chicago: Members were invited to attend a meeting of the Mitral Valve Prolapse Syndrome Society. A potluck was planned for November 2nd at Pat Damler’s home. Patricia Damler, President, (815) 568-6216

IA Cedar Rapids: Dan & Mary Dias, (319) 364-1327 ME Maine: At the meeting set for October 26th at a rehabilitation pool run by PEAK (Physical, Ergonomic, Aquatic and Kinetic) Nyla Cornforth, R.N., with a certificate in Aquatic Therapy, discussed “Safe Water Therapy for Joint Stabilization”. Samantha Paine-Paradis, President (207) 827-1637

MD Baltimore: Michelle Adams, (410) 879-0548 MA Boston: Robin Neas, (617) 767-4553 MI Detroit: Marianne Hoppel, (810) 363-2755

Continued

November, 1996 EDNF — Page 5

— Branch News — MN Minneapolis – St. Paul: A meeting was set for October 30th at Southdale Library, Edina, MN. Jackie Collins (612) 9344420 and Pam Popken-Harris (612) 541-9307

MO St. Louis: Janet Dunn, (314) 645-4114 NJ Bergen – Passic: Cathy Pizza offers support for EDS patients via the telephone: (201) 440-2519 NY Western New York At a meeting on November 8 at the Clearfield Library, Amherst, NY, Kathy Verdaasdonk, a genetic counselor, will speak. Lou VanWert, President, (716) 688-2756 New York City Area: The October meeting will be devoted to the discussion of the group’s future plans. An outreach letter is being drafted to be sent to the genetics and orthopaedics departments of local hospitals. Kim Christensen, (914) 632-7264

NC Western Section: Hannah Dickson, (704) 253-1323 Raleigh – Durham: Jules Leggett, (919) 772-9443 Greensboro — Winston – Salem: A meeting is planned for October 26 at Wesley Long Community Hospital. Charlotte Mecum, (910) 722-5879.

OH Northeastern Ohio: At the December 14th meeting, at Southwest General Health Center, the branch will have a brief round-up of its end-of-the-year status, followed by a Christmas Social, with gift exchange. Darlene Clarke, President, (216) 888-7317 FAX: (216) 888-7340 Akron: Katy George, (330) 253-0706

OR Portland: Shulamit Levine, (503) 775-0058 PA Philadelphia: A meeting was planned for October 19th at Doylestown Hospital. Nominations for branch officers were made, with the voting set for the November meeting. Roberta Kroll, (215) 794-8043. Southeastern Pennsylvania: Dr. Mark Lavallee, (717) 851-2345 Scranton — Wilkes Barre — Hazelton: Amanda G. Hart, (717) 341- 5791

VA Richmond: At its first meeting on September 14 the group elected Kim Hayes as President, Kathleen Grant, Secretary and Raymond Grant, Treasurer. Next meeting will be in January. Kim Hayes, (804) 739-0739

WA Seattle: Planning has begun for a November meeting involving a pot-luck lunch. The Seattle Branch is one of several that is interested in cooperating with a research project based at the University of Tennessee, Memphis, on the relationship of osteoporosis and EDS. Barbara J. Uggen, President, (206) 771-3997

WI Milwaukee: Topic for the September meeting was how to stress less, and that for the October meeting was helping kids with EDS stay fit. On November 19th, the speaker will be Dr. James Sanger of the Department of Plastic and Reconstructive Surgery, Children’s Hospital. The meeting will be at the hospital. Lynn Sanders, President, (414) 679-9682

CANADA Western Ontario: Christine Bell, (519) 296-5110 Calgary, Alberta: A meeting is planned in November at Children’s Hospital, Calgary. Linda Laverty, (403) 257-2776 Toronto: Jill Douglas, (416) 222-6221

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

November, 1996 EDNF — Page 6

MEDICAL HISTORY FORM PLEASE USE ONLY AS A GUIDE This guide is in response to many requests from our members who have found that, in the event of an emergency, it is difficult to recall the details of one’s medical history. Please use this form as a guide to record all your important information. You can fill this out and keep it with you in case of emergency or when you need to communicate your medical history to new physicians. Please make as many copies as you need.

— ALLERGIES — Drugs: ________________________________________________ _____________________________________________________ _____________________________________________________ Foods: ________________________________________________

— PAST MEDICAL HISTORY —

_____________________________________________________ _____________________________________________________

MAJOR ILLNESSES (INCLUDE DATES)

Environmental: _________________________________________ _____________________________________________________

_____________________________________________________

_____________________________________________________ Types of reaction: _______________________________________

_____________________________________________________ _____________________________________________________

_____________________________________________________ Treatment: ____________________________________________

_____________________________________________________ _____________________________________________________

INJURIES AND HOSPITALIZATIONS (INCLUDE DATES)

USE OF THE FOLLOWING SUBSTANCES (INCLUDE FREQUENCY) Alcohol: ______________________________________________ _____________________________________________________

_____________________________________________________ _____________________________________________________

Tobacco: ______________________________________________ _____________________________________________________

_____________________________________________________ _____________________________________________________

Drugs: ________________________________________________ _____________________________________________________

SURGERIES (INCLUDE DATES)

— CURRENT MEDICATIONS — (PRESCRIPTION & OVER THE COUNTER) Name: ________________________________________________ Dose: _________________________________________________ Frequency: ____________________________________________ Purpose: ______________________________________________

_____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________

Name: ________________________________________________ Dose: _________________________________________________ Frequency: ____________________________________________ Purpose: ______________________________________________ Name: ________________________________________________ Dose: _________________________________________________ Frequency: ____________________________________________ Purpose: ______________________________________________

November, 1996 EDNF — Page 7

Continued from page 1 This helps support the elbow and forearm and allows for more precise work with less fatigue. Fine, but what about people whose jobs require a great deal of force, especially downward? Their guideline is 4-8 inches below elbow height and includes hammering, sawing, cutting, and some heavy assembling. Now, we have a starting point for determining the height of the workstation. But how do we determine whether it is better to sit, stand, or a combination of both to perform our job tasks. (Not everyone will have a choice due to their physical condition). You guessed it. More guidelines. Remember, these are not set in stone, they just provide a good place to start. You also need to consider how you feel and be creative. There are always several ways to arrive at the same solution. For instance, if you are writing on a desk that is too high, you can either lower the desk or raise your chair. If neither of these is possible, some people would choose to write on their laps. While this is not an ideal situation, it is certainly better than writing on a desk that is too high, thereby causing very awkward shoulder postures.

After choosing the correct height for the task, deciding whether to sit, stand, or sit/stand, the rest of the workstation must be set up properly to avoid awkward postures. First, determine your reach envelope - the reaching distance your body can handle without putting it in awkward positions. While seated or standing erect, not hunched over, with elbow extended out front (about 180 degrees), but close to the body, note your maximum reach within a semicircle without overextending your elbow or reaching forward. Start on the left side of the workstation and sweep your arm in a semicircle until you reach the right side. This space encompasses your reach envelope. Place frequently used items in this area.

One great way to limit awkward postures is by eliminating the temptation to do so. What does that mean? If you know what items are used frequently, do not place them in a position where you must constantly reach overhead, behind your body, down to retrieve items from the floor, or twist. People who keep frequently used reference books on an overhead shelf, inevitably end up over reaching/stretching for the book instead of standing up to retrieve it. Thus, by properly Standing is usually preferred for precision arranging workstations for particular tasks, work with supported elbows, light assembly temptation is avoided. If several people share work, and heavy work. Sitting is preferred the workstation or if several different tasks for fine work, exacting visual tasks, writing or light assembly work, and moderate manual occur there, adjustable items are imperative to ensure that each person doing each task work. Note the overlap between sitting and can set up their workstations properly. standing guidelines. Several tasks can be Recall from Part 1 of this article the done sitting or standing, depending on uniqueness of static postures. These occur preferences. Rotating between sitting and standing tasks is often beneficial. Other tasks when a body part is not moving, but the muscles must still work. Avoid using hands are better performed in more of a sit/stand as holders or jigs. Do not hold an item in the posture. Ergonomically designed sit/stand left hand and use the right hand to work on chairs are readily available. They are that item. This puts a tremendous amount of especially good for tasks in the kitchen: sit/ stress on the left, non-moving hand. Instead, stand chairs take pressure off the back and use a vice grip, holder, or jig to position and feet, while allowing freedom of movement. hold the item in place. It doesn’t need to be Unfortunately, they tend to be rather pricey. A sit/stand chair capable of withstanding the fancy and you don’t need to spend a fortune. Most people already own materials that can rigors of kitchen work, costs at least $60. be used for this purpose. Here are some more guidelines to help in determining whether a job should be done Another way to control awkward postures is seated, standing, or in a sit/stand posture: to change work methods. Have someone Sitting is usually less fatiguing than standing. Seated people are better able to perform precision tasks. Standing allows the person to exert greater forces. Standing allows greater freedom of movement. Muscular stress in increased for people who stand. If you must stand, try to alternate with a seated task.

observe you do a task that causes discomfort or unusual fatigue. If possible, videotape the job or at least take still pictures. The reasoning behind this is simple - most of us do not realize how we look when we perform various tasks. We may believe we are doing things correctly, when in fact our bodies often deceive us. Now analyze the videotape or pictures. Look for the seven potential risk factors or stressors discussed in Part 1 of this article. Focus on the most severe risk factors first. November, 1996 EDNF — Page 8

Ask yourself if you are doing the job in the best possible manner, with the least amount of stress to your joints and soft tissues. Are your joints in neutral positions? Do you employ any extreme ranges of motion? Are you lifting properly? Knees should be bent, not straight, although many people still insist on lifting with their legs straight even after back lifting training. Why is this? Because straight leg lifting requires less energy than bent knee lifting. So a person with a repetitive lifting task is more likely to lift with straight legs to conserve energy. Here, as in many other ergonomic examples, there is a trade-off and no perfect solution. However, since our goal is to reduce the amount of awkward postures and the severity of each one, it is clear that bent leg lifting is preferable. Lastly, another very effective way to control awkward postures is to choose the proper tool. First, consider whether the work will be done on a horizontal or a vertical area. Unless the tool is adjustable, you cannot use the same one on both surfaces without causing significant awkward postures to the upper extremity. Say you have a pistol shaped drill. In order to maintain neutral postures, it should be used at or close to elbow height on a vertical surface, although there are a few exceptions. If you were to use this tool on a horizontal surface, your wrist would be forced into a very awkward posture, most likely ulnar deviation. Thus, as a general guideline, power grip tools work best on vertical surfaces and in-line (straight handle) tools work best on horizontal surfaces. Here are some other general guidelines to consider when choosing tools. Recall that an ergonomic tool used in an incorrect manner is just as potentially risky as using a nonergonomic tool.

Choose a tool so that: ✦ Hands, wrists, arms, and shoulders can be kept in neutral positions. ✦ The tool can be held near its center of gravity to reduce the amount of force needed. ✦ The weight is as light as possible. Don’t use a heavier tool than is necessary. ✦ You can use a power or oblique grasp. Avoid tools that require pinch grips. ✦ Handles are well padded and long enough to distribute force over entire palm. ✦ Trigger mechanisms are operated with more than one finger & don’t require continuous pressure. ✦ It has built in vibration dampening features.

✦ It is easy to open and close without effort. Buy tools that are spring-loaded. To summarize, there are 3 major methods to control awkward postures. They are as follows:

Change Orientation of Work. ✦ Place frequently used items within easy reach. ✦ Orient bins at an angle. ✦ Use jigs/holders to reposition work. ✦ Provide adjustable workstations. Ensure work height is correct for the task.

Change Work Method. ✦ Bent vs. straight-leg lifting. ✦ Training. Proper postures/joint positions. ✦ AVOID extreme ranges of motion.

Change, Modify, or Redesign Tool. ✦ In-line vs. pistol grip tool. ✦ Ergonomic vs. non-ergonomic tool. ✦ Use spring-loaded tool whenever possible.

Mechanical Stress Controls Mechanical Stress is one of the easiest risk factors to control. Any sharp edge which comes into contact with a body part should be rounded or padded. Likewise, any tool that digs into your hands or has sharp edges should be padded. There is an abundance of material that makes great padding or you can buy tools and accessories that are ergonomically designed to distribute force over a large surface area. Many packages come with foam padding. Cut it to the proper size and use tape to stabilize it and you have a cheap and effective control. Since foam is easily compressed, start with a larger amount. Replace worn padding as necessary. Towels can also be used. Be creative. If you need something that looks a bit more professional, there is a wide range of products on the market. These include wrist and mouse rests which come in a variety of sizes and different types of material, elbow sleeves with padding, cut resistant, cushioned gloves and tools, and ergonomically designed scissors, pliers, etc. that distribute force evenly over the entire hand. Proper workstation setup can also decrease mechanical stress. Avoid using hands as tools, especially hammers. Do not pound items with hands. Control measures

for Mechanical Stress are summarized below: ✦ Round or flare sharp edges and objects. ✦ Pad sharp edges and objects. ✦ Distribute force over as large an area as possible. ✦ Ensure workstation is at the correct height and setup properly. ✦ Don’t use your hands like hammers or any other tools.

the gloves are extremely thin and form fitting. If you need dexterity or are afraid of dropping things, get gloves with gripping dots. Afraid of cutting off your finger? Then, you need cut-resistant gloves made of kevlar and other high tech materials. Do you frequently dip your arms into vats of poisonous, hair burning chemicals? Make sure the glove material is made for the type of chemical you use.

In summary: Poorly Fitting or Poorly Chosen Glove Controls Believe it or not, many people who wear gloves, especially in the workplace, have no idea why. When asked, they state that the person before them wore gloves, so they do too. Bad answer. It is imperative to know why you are wearing gloves. Why? Because poorly fitting or poorly chosen gloves are a potential risk factor. If you don’t need gloves, you shouldn’t be wearing them. The next step is to determine why gloves are necessary. Ask yourself the following questions: Am I trying to protect my hands from the cold, cuts, burns, chemicals, vibration, infection, food handling, or mechanical stress? Do I need dexterity or to feel sensation in my fingers for this task? Am I handling delicate objects? Will my hands get wet? Once you know why, it’s time to choose the right type of glove. Rule #1 - Choose the least bulky glove available that will do the job and protect your hands. If you are only concerned about cuts on the fingers, consider using finger tape only. If it is your palm that is exposed and nothing else, consider using an antivibration glove with the fingers tips cut out. Rule #2 - Make sure the gloves fit correctly. If it doesn’t fit, you must acquit. Oops. I got a bit sidetracked. There is no such thing as one size fits all. Well, there is, but I think you can guess how I feel about that. Glove manufacturers are finally responding to the need for odd sizes, both very small and very large so there should be no excuses. Almost every size is available off the shelf. Rule #3 - Choose the type of glove carefully and thoughtfully. Throw away worn, torn, or holey gloves promptly. Gloves are extremely specialized today. If you are allergic to latex, make sure there is none in your glove. If you like the powder that comes in some of the gloves, great, but keep in mind that people may be allergic to that too. If you need good sensitivity, make sure

✦ Analyze the need for gloves. Why are you wearing them? ✦ Provide a variety of styles and sizes of gloves. No one size fits all. ✦ Eliminate or reduce the need for gloves. ✦ Use the lightest, least bulky gloves possible. Three risk factor control methods down. Four to go. As you can see there are many ways to reduce, eliminate, or avoid these three potential risk factors or stressors. Although this was not intended to be an exclusive list (it would be impossible), it does cover many of the main control methods. Remember, it is impossible to eliminate all risks. Focus on the most severe & reduce others as much as possible. I have put together a list of adaptive equipment/ergonomic catalogs that carry the products mentioned in this article. If you would like a copy, please send me a business size SASE. I strongly suggest that you request as many catalogs as possible. Not only is there a wide range of similar products, there is also a wide range of prices, return policies and guarantees. Comparison shopping is a must. Many drug stores, large chains, and discount outlets also carry adaptive equipment and assistive devices. New Products are introduced every day.

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. Eastman Kodak Co. (1983) Ergonomic Design for People at Work, Vol. 1, Lifetime Learning Publications.

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 November, 1996 EDNF — Page 9

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

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1991, Volume 6, Number 3, “Ehlers–Danlos Syndrome Type III and Pregnancy”

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

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

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

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

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

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

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Pekkanen, J. (1992, November). When Your Doctor Doesn’t Know. Reader’s Digest, pp. 1-5.

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Name: ____________________________________________________________________ Phone Number: __________________________ Address: __________________________________________________________________________________________________________ City: ______________________________________________________________ State: __________ Zip: __________________________ November, 1996 EDNF — Page 12

Joint Surgery In Ehlers—Danlos Patients: Preliminary Results Of A Survey Jacob Weinberg, B.A., Christopher Doering, M.D., & Edward G. MacFarland, M.D. From the Section of Sports Medicine & Shoulder Surgery Johns Hopkins University Department of Orthopedic Surgery Address correspondence and reprint requests to: Edward G. MacFarland, M.D. Director, Section of Sports Medicine And Shoulder Surgery Johns Hopkins University Department of Orthopedic Surgery 2360 West Joppa Road, Suite 205 Lutherville, MD 21093 (410) 583-2850 151 EDS patients taken from the archives of the John Hopkins Department of Genetics and from the Ehlers–Danlos National Foundation were surveyed about joint problems and surgeries related to shoulders, elbows, knees, and ankles. In this group, 76.8% (n=116) were female and 23.2% (n=35) were males. All EDS types were represented, except type X. Patients of unspecified EDS type also participated. The type III group was the largest constituent (43.0%). The smallest groups were types V, VII, VIII each with one respondent (0.7%).

Overall, 96.0% (n=145) had trouble with at least one shoulder, elbow, knee or ankle. Joint problems were found in 97.4% (n=113) of the females and 91.4% of the males (n=32). The average age of onset of joint symptoms in the female population occurred at 12.5 (range: 0 – 72) years of age while in the males at 7.7 (range: 0 – 54) years of age. Seventy five percent (n=114) of those surveyed indicated shoulder problems, 41.7% (n=63) had elbow problems, 84.8% (n=128) had knee problems, and 71.5% (n=108) had ankle problems. Of the total group complaining of joint problems (n=145), 55.9% (n=81) had bilateral shoulder problems. Bilateral elbow problems constituted 29.7% (n=43). Seventy one percent (n=103) had bilateral knee problems and 57.2% (n=83) had bilateral ankle problems. In the surveyed population, 47.7% (n=72) underwent joint surgery. Of those reporting shoulder problems, 24.6% (n=28) had shoulder surgery. In the groups of joint problems, 17.4% (n=11) underwent elbow surgery. Thirty six percent (n=55) underwent

knee operations. Seventeen percent (n=19) underwent ankle procedures. Over 14.0% of bilateral shoulder, elbow, and ankle patients operated on both sides. Only 4.7% (n=2) of the elbow group underwent surgery on both elbows. In assessing the results and complications of the procedures, we discovered 72 patients who underwent 419 procedures. Unfortunately, the design of the original survey did not provide us with enough information to determine the net success of each surgery. We plan to resurvey the original respondents who had surgery. If you did not participate in our original study, we would appreciate it if you could fill out the questionnaire in Loose Connections (Vol 9, No. 4) by February 1, 1997, or contact: Edward G. MacFarland, M.D. EDS Joint Questionnaire Section of Sports Medicine And Shoulder Surgery Johns Hopkins University 2360 West Joppa Road, Suite 205 Lutherville, MD 21093 (410) 583-2850

EDNF ✸ Recipes Step One ✸ Take one (1) or more of your favorite recipes and submit them for our EDNF Cookbook. ✸ We’ll mix them thoroughly, divide between catagories and publish them for our members to obtain.

Step Two Please send them to: Karen Czerpak 4 East Church Road Norristown, PA 19401

Step Three Order your books and give them as presents to your friends!!! November, 1996 EDNF — Page 10

Number

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Cost: $2.50 each or 5 for $10.00 – price includes postage and handling. For Canadian orders, please add $3.00, and for all other countries outside the United States, please add $5.00 to the cost of past issues requested which will cover shipping and handling charges. 1996, Volume 11, Number 3, “Ergonomics: Recognition and Evaluation of Risk Factors and Potential Stressors (Part 1)”

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

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

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

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

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

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

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

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

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

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

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

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

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1992, Volume 7, Number 1, “The Role of the Genetic Counselor”

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Letters To The Editor Dear Editor: I am writing in response to an article in your August ’96 issue by Florie Brizel, entitled “As We Go Rolling Along”. In the article she stated that she was unable to walk with crutches after she developed a wrist problem in addition to her difficulty in putting weight on one of her legs. As a result she is now using a wheelchair. I am a physical therapist and a member of EDNF. Although I do not know her entire situation she may have other options than a wheelchair. People who are unable to bear weight through the hand/wrist or forearm may be able to use a platform crutch attachment which allows weight to be borne on the upper forearm and elbow. If her balance is inadequate for such a devise she can also get a platform walker attachment. She may still require the wheelchair for distances but should be able to manage with this device and crutches if she has no other complicating factors.

Letters you send in will be answered through Loose Connections. I think its important for kids to have a friend to talk to who understands what they are going through because they are going through the same thing. Don’t forget! Send in your letters, riddles, or jokes to me I hope to hear from you soon. Charne Forst c/o EDNF 6399 Wilshire Blvd., Suite 510 Los Angeles, CA 90048 ❤❤❤❤❤❤❤❤❤❤❤❤ Dear Editor:

Our son, Matthew, is 12 years old. Since birth, Matthew had very low muscle tone. At about a year old he was diagnosed with EDS but we didn’t know which type. When he was 9 years (3rd grade) he was diagnosed as having type I EDS. In 1995 he had oral surgery because his teeth were not coming in properly. He also had a skin tissue graft on his bottom gum in September 1996. He has a terrible underbite. His orthodontist wants She can consult a physical therapist in her to wait until he is about 16 years old to start area with a doctors referral or if none are available or she can not afford it, this piece of correcting this problem. If anyone has had any teeth brace work, please send the equipment may be ordered or purchased information to us via the Foundation or to through a medical supply company listed in our home address: the phone book. Dan & Mary Dias If you need further information, please 3230 Lindsay Ln. SE contact me through EDNF. Cedar Rapids, IA 52403 Sincerely, ❤❤❤❤❤❤❤❤❤❤❤❤ Torsten Muehl ❤❤❤❤❤❤❤❤❤❤❤❤ Dear Editor: I noticed you asked for parents permission for the pen pal program. I’m 26, but I would love to be a pen pal to a child with EDS. I didn’t have anyone to talk to ask a kid about it, and I’d like to help someone feel better and understand. It sure would have helped me. Thanks, Laura T. (Laura has EDS type VI) ❤❤❤❤❤❤❤❤❤❤❤❤ Hi❣ ❣ My name is Charnie Forst and I am nine years old. Lots of kids don’t know what it is like to have EDS and I thought that it would be nice for kids who do have EDS to write in and tell each other stuff. It doesn’t have to be fancy or long or even spelled perfectly (as long as I can read it).

Dear Editor: Tired of cold weather? Try a Memphis, Tennessee trip to further the study of osteoporosis in our EDS population. Did you know that 90% of the collagen in our bodies is in our bones? Something, Dr. Barbone told us during our visit. Basically Dr. Carbone needs volunteers who are not on steroids or anti-inflammatories. These volunteers must have a definitive diagnosis of EDS. Urine and blood samples are obtained after fasting after midnight. A noninvasive ultrasound and DEXA scan (also painless) measures your bone densities. You will be counseled on the bone densities very clearly. She is wonderful about answering questions and will send copies of your bone density results home with you. Preparations: Be sure to bring a list of your medications including dosages, how often these are taken and the date originally prescribed. This includes routine and as November, 1996 EDNF — Page 13

needed medicine, both prescription or over the counter medicine, even vitamins. Dietary intake questions will be asked to see how much calcium you consume. We each filled out forms about our medical events including dates, you should have a copy of these already. On September 23rd, Meryl Brutman and another member ventured on her journey to Memphis. My husband Ron and I transported an additional 2 volunteers to Memphis on September 30th. Our hotel rooms were paid in full by the research grant and 24 cents a mile to transport persons. We even took independent trips through Graceland and Beale Street. It’s always nice to have fun when you are taking a trip to the doctor. I wouldn’t hesitate to encourage you to make this trip with further members. Sincerely, Pat Damler RN 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

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: Cowgill Printing ✺ Cleveland, OH. & J. P. Graphics, Inc. ✺ Berea, OH. For their expert assistance with our newsletter.

We’re On the Internet & The World Wide

Memorials & Honorariums

In Honor of Linda Neumann-Potash Erika & Ted Neumann

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

Alan P. Brutman Rosalie, Len and Ross Brutman

In Honor of our Wonder ful Daughter, Meryl Brutman Ed & Felice Brutman

In Memory of Judith Simmons Dion

In Memory of Tessie, Leo, & Howard Brutman

Sue E. Dion

Angela Wonders Mr. & Mrs. Regis Charles Klontz Donald & Joyce Twomley Susan & Marie Riedinger Alec & Gail Wroblewski Earl & Mary Dykes Linda & Doulas Ryland Sylvia J. Wilson Thomas & Jean Bethune Frank & Annette Wonders Roland & Beatrice Wonders Emily Koop Miriam Machovec

In Memory of Loyola Buckley Bernie & Esther Worne Madeline Alden Julie Alden Jacqueline Anthonis

Sue E. Dion

In Memory of Susan Stephenson’s Grandmother

In Memory of Rick Wonders

In Memory of Roger Pickford, Jr.

A wonderful site with great sources of information about EDS, articles of interest, medical resources, and related topics.

Kris Shimamoto Merle & Mary Hart

Sue E. Dion

In Memory of Florence Powloski

In Memory of Michelle Dion

w w. (c pho as e e ni se x. ns ne iti t/ ve ~ l e ) i

Ed & Felice Brutman

Ehlers–Danlos Syndrome World Wide Web Home Page

Sue E. Dion

Lou Van Wert

In Memory of Carolyn Loring Josephine Mayo Curtis Wilson J. Gilbert Seaux Louellen Winship Michael Ginsborg Amelia Pantaleo Cotter Sharpton Family Mark & Peggy Kidwell Employees of the Office of the Inspector General

In Loving Memory of our son William Huber Frieda & Wilhelm Huber

In Memory of Clare & Alexander Wolf

In Memory of Lisa Dion Pickford

Ed & Felice Brutman

Kelvin & Daphine Schuchart Andy & Charlotte Schuchart Violetta Schuchart Don & Kathy Schuchart Rich and Mary Holst Angie Nolte Rick and Bea Koontz Shawn & Carrie Livingston Mary Carroll Jay & Kathy Agness Judy Benson Jim Eaton Cheryl McCullagh William and Kethleen Mitchell Clark & Pat Van Hauen Lowell & Marguerite Thalman Bary Wilson Boy Scouts Troop 33 Jerry Purcell Doug and Marlene Rasmussen Ruth Shield Peter Wetrich Susan & Gary McBroom Marv & Coreen Mattfeld Bud & Liane Nicholas Sherry Harding Barbara Johnson Barbara Kolbe Lee & Marie Bendull Ralph Briden Sandy Cavin Cora Fee Audrey & Arnold Freitag Georgiana Lyons Leonora Mahlhaus Vi Moorman Dave & June Niedert Vicki Oleson Bob & Mary Rellihan Robert & Ginny Rule Raymond Smith Bonnie Smith Mary Staniger Rae & Barbara Scott

In Honor of Meryl B. Brutman

In Memory of Kurt Schuchart

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:

In Loving Memory of Pauline Weil

eds–d–request@stgenesis.org with the subject as subscribe, no note in the body is necessary.

In Memory of Shaun Bell

Mother of Rita Roth Taylor and Fred Weil Grandmother to: Berton Travis, Lawrence Travis, Julian, Lisa & Michael Weil Great-grandmother of Samantha, Brian & Karl

Chateau Gardens-Parkhill Nursing Home

We all love and miss you every day

In Honor of Sarah Potash

In Memory of Ray Lippenberger

Lou Van Wert

Ohio Board of Education Rm. 815 Don & Rae Lippenberger

November, 1996 EDNF — Page 14

It’s as easy as that to get connected with EDSers. Please surf by and join us, we are a very supportive group!!!

Ehlers–Danlos National Foundation 6399 Wilshire Blvd. Suite 510 Los Angeles, CA 90048 (213) 651–3038 — Membership Form — Please send a change of address, if applicable 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 its 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. November, 1996 EDNF — Page 15

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Together... We Will Find A Brighter Day

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 Foundation 6399 Wilshire Blvd. Suite 510 — Los Angeles, California 90048 Phone: (213) 651–3038 — FAX: (213) 651–1366