Loose Connections (Summer 2007) by Mark Martino

SUMMER 2007 “Our deepest fear is not that we are inadequate; our deepest fear is that we are powerful beyond measure.”

L O O S E CONNECTIONS

Nelson Mandela

(1918-)

TABLE OF CONTENTS SUMMER 2007

n May, EDNF published EhlersDanlos Medical Resource Guide, the first in a new series of medical brochures; we have enclosed a copy with this issue of Loose Connections. One of the most important parts of EDNF’s work is education, and the 2007 Communications Theme, “Educating Medical Professionals: Teaching the Doctors,” has renewed our attention on distributing accurate and current information in new ways. The Ehlers-Danlos MRG was designed to give the medical community an introduction to EDS, EDNF, and our Medical website. These expertlyproduced color brochures are a professional face for EDNF, crafted to attract attention and containing detailed upto-date guidance. Its text describes EDS and all its forms, talks about the process of diagnosis, why early diagnosis is important to patients and doctors, and what happens after diagnosis.

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FEATURES The Ehlers-Danlos MRG is the beginning of a continuing series that will explore how EDS types affect health care professionals in real, everyday ways. The first, our Dentistry MRG, is ready for publication; it describes ways EDS can show up in dental practice and why it is crucial for the health of their patients to speak up when they see EDS. It also contains simple accommodations that can make EDSers more comfortable and make our trips to the dentist less dangerous.

Awareness Month...........1-5 Golden Thread Story......... 7 Understanding Social Security Disability Appl.... 6

MEDICAL Ehlers-Danlos Syndrome, Kyphoscoliotic Type........ 13 Sacroiliac Joint as Source of Intractable Pain........... 15 Asthma & Airways.......... 16

MEMBERSHIP & NEWS

EDNF is searching for new ways of distributing the Dentistry MRG, and of funding that distribution.

Conference Announced..... 5

The next in the series will be Ophthalmology MRG, to be published later in the year; other specialties including pain, obstetrics, men’s health and many more are scheduled for the coming years. ■■■

Membership Form........... 18

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News........................... 6, 17 Local Groups................... 17 Board of Directors............. 2 Submissions Guidelines.... 3

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L O O S E CONNECTIONS PAGE TWO • SUMMER 2007

PUBLISHERS INDEX Published Quarterly by Ehlers-Danlos National Foundation FOUNDER Nancy Hanna Rogowski

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Are You Hypermobile and in Pain? You may have Ehlers-Danlos Syndrome, a connective tissue disorder.

1957 – 1995

Learn more at www.EDNF.org

President & CEO Cindy Lauren Board of Directors Richard Blouse Robin Coppi Michele Darwin Richard Goldenhersh Jeanne Kingsbury Cindy Lauren Charlotte Mecum David Specht Professional Advisory Network Patrick Agnew, DPM Peter Byers, MD Edith Cheng, MD Joseph Coselli, MD, FACC Joseph Ernest III, MD Clair Francomano, MD Tamison Jewett, MD Mark Lavallee, MD Howard Levy, MD, PhD Nazli McDonnell, MD, PhD Dianna Milewicz, MD, PhD Anna Mitchell, MD, PhD

Taxi Tops

he local Group of Greater San Diego is very proud to share our awareness project: Yellow Taxi Cab provided free advertising on the tops of ten taxis beginning the last two weeks of April through most of May. We needed to raise $455 to cover the cost of printing the signs and raised $300 from family and friends, then voted to take the remaining funds from the Local Group of Greater San Diego’s account. We worked fast so the signs would be on the cabs in time for the American College of Physicians Internal Medicine Conference April 19-21, at which our group also manned an exhibit booth. Special thanks to Sharon Geraty of Yellow Taxi Cab Company and Yvonne McClure of LAK Advertising. �

Raman Mitra, MD, PhD Linda Neumann-Potash, RN Terry Olson, PT Mary F. Otterson, MD, MS Melanie Pepin, MS, CSG Elizabeth Russell, MD Ulrike Schwarze, MD Karen Sparrow, PhD Brad Tinkle, MD, PhD Mike Yergler, MD Editor Barbara Goldenhersh, PhD

ST LOUIS PSA

San Fernando Valley PubliciTY

h e S a n Fe r n a n d o Va l l e y local group had their recent meeting published in The Daily News, the main paper for the entire San Fernando Valley area: “The San Fernando Valley Branch of the Ehlers-Danlos National Foundation will present a free public meeting at Sherman Oaks Community Hospital. Ehlers-Danlos syndrome is a genetic connective tissue disorder caused by a defect in collagen synthesis. Severity can range from mild to life threatening. Symptoms of EDS include chronic pain, fragile skin, unstable joints and early onset of osteoarthritis. There is no known cure, but supportive treatment is available. The featured speaker will be Robin Coppi, former chair of the EDNF board of directors....” �

t. Louis Connections branch arranged for the EDNF public service announcements to be played in rotation on WXOZ Radio in Southern Illinois. They will be heard regularly hoenix Metro group held their and the station is willing to include first Mother’s Day Tea fund-raiser. additional EDNF items in the future. � They hope to make it an annual event. �

Mother’s Day Tea

L O O S E CONNECTIONS SUMMER 2007 • PAGE THREE

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Piedmont Triad Offers Bag Buddies for Fundraising

Sfv Branch at Arthritis Walk

iedmont Triad Branch is using Bag Buddies as a fund-raiser for EDNF. A Bag Buddy is a plastic handle on which you can hang plastic grocer y bags (or other bags); holding the Bag Buddy handle avoids the plastic bags cutting into your fingers and hands. These are useful to anyone and should be popular. Piedmont group ordered enough of the Bag Buddies to share them with other groups; the Bag Buddies are imprinted with the EDNF logo, name and website address. For their Buddies, Piedmont Group attaches a business card sized note with their local group contact information on one side and a message to the donor on the other. Other chartered local groups can acquire them at cost, $1.25 each, plus postage; Piedmont Group is offering the Bag Buddy for a $2.25 donation. If your group would like to get some of the Bag Buddies, please contact Angie Smith, group president, at 336-694-9553. �

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he San Fernando Valley branch participated in the Arthritis Walk at Warner Center Park in Woodland Hills on May 20th by having our EDS informational literature on our own table so that the walk participants and others could learn about Ehlers-Danlos Syndrome. The large new banner was visible from quite a distance and attracted many visitors to the table where we had the opportunity to answer questions about EDS, give out our pamphlets and even some of the Medical Reference Guides to medical professionals. Teachers and parents received the booklet for Educators and Parents including one teacher from a private school who said she has a child with EDS in her class and was very grateful for the information we supplied. Sincere thanks go to the Arthritis Foundation and Virginia Powell, Program Director. �

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he Michiana Branch of EDNF held an awareness and fund-raising event on June 1 and 2 as part of the SunBurst Expo in South Bend, Indiana.

Text articles, photographs, or any other submissions to Loose Connections are accepted only on condition that publication of that material is not under copyright or other restrictions on its publication. EhlersDanlos National Foundation reserves all and final editorial privileges, including the right to choose not to print a submitted story; submissions may be edited at the discretion of the editorial staff.

On the first day, their awareness booth was open for marathon registration, handing out brochures to the thousands of visitors, and accepting donations for Bag Buddies and other goodies. The EDNF Kids

The opinions expressed in Loose Connections are those of the contributors, authors, or advertisers, and do not necessarily reflect the views of Ehlers-Danlos National Foundation, Inc., the editorial staff, Professional Advisory Network, or the Board of Directors.

(continued on next page)

EDNF does not endorse any products.

SunBurst Expo: Michiana Branch

L O O S E CONNECTIONS PAGE FOUR • SUMMER 2007

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(continued from previous page)

balance issues, and the thought required in movement to keep & Teens Art Contest Exhibition our bodies supported. was on display as well, and drew 2. A large version of the EDNF many visitors. Volunteers were coaches’ poster was placed next up before dawn on the second to a full-length mirror, allowing day to help with race registration, people to try the Beighton scale course management and other on themselves. support for the marathon. It was a fun but tiring two days that Visitors included several EDSers introduced many to EDS. � unaware of EDNF who were able to find information and support right in their neighborhood. There were a number of other possible EDSers who had been trying to figure out the cause of all their h e EDS Advocates of problems, and took material to Northern California Branch give to their doctors. Doctors, is delighted to report that our physical therapists, and EMTs May Awareness participation in stopped for more information. On the Marin Human Race was a top of this highly successful public huge success, with nearly 7500 outreach, our Local Group raised people attending this year’s event approximately $3,000 for EDNF. � for non-profit organizations.

Marin Human Race

Pictures below and to right are from the

The EDNF Local Group had eight Awareness Booth at the Marin Human Race. participants in the Race itself, with our own Maggie Buckley winning the wheelchair division. Winners were asked to donate their financial rewards to a charity, and Maggie was able to convince several other winners they should choose EDNF. At the group’s Awareness Booth, they interacted with people in two fun activities that drew many players into an active awareness of EDS. Both can easily be used at nearly any EDS event and make it easy to start conversations about EDS and EDNF with on-lookers and participants: 1. A Twister® game gave players a chance to experience living with EDS — the discomfort,

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L O O S E CONNECTIONS SUMMER 2007 • PAGE FIVE

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The EDS message is getting out there!

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• Piedmont Triad Branch, North Carolina: Posters, PSAs, Bag Buddies

• Southern New England: MRG & Business Card or our second annual EDNF Distribution Awareness month, EDNF local groups were asked to each do • Greater Houston: Kroger something to increase awareness cards & MRG distribution of EDS in their communities. We are so very proud of the groups that • Northern Virginia, Baltimore & DC: Brochures, Posters, have made the effort to educate Fundraising Opportunities their friends, neighbors, schools and the healthcare community about the need to know about EDS. The more such efforts are attempted, the more people Please see below the wonderful everywhere will be aware of work that our groups have EDS. We hope our other groups will do their part to spread the achieved: message, and that each succeeding Awareness Month will see more • Alabama: Newspaper Ad participation. A • Arizona: Mother’s Day Tea

• Northern California: The Human Race

• Central Florida: MRG D i s t r i b u t i o n a t Tw o Professional Associations • Emerald Coast Florida: MRGs to Nursing Homes & Clinics • Michiana Branch: Sunburst Marathon

Starting June 29: $10 Donation to

EDNF

when you create a FREE

CarePage

• St. Louis, Missouri: PSAs to Local Radio • New Mexico: Newspaper Article • Western New York: Posters & Presentations

e ’ r e excited to announce the 17th learning Conference, July 31 - August 2, 2008 at the Renaissance hotel in Houston, Texas. Besides inviting the PAN to speak, we have a few other physicians who will complement the agenda. Here are some highlights:

Thursday, July 31 • Group Leader Meetings (morning and afternoon) • Social Security Disability presentation and one-on-ones (afternoon) • Opening Reception (evening)

Friday, August 1 • • • •

• San Diego, California: Taxi Toppers • S a n F e r n a n d o Va l l e y, California: Information Booth at the Arthritis Walk

EDNF CONFERENCE 2008

http://www.carepages.com/ednf

Presentations (all day) CEU sessions (all day) Vendor booths (all day) Dinner on your own (evening)

Saturday, August 2 • • • •

Presentations (all day) CEU Sessions (all day) Vendor booths (all day) Awards Banquet (evening)

Be sure to make your hotel reservations early by calling 713629-1200 and asking for the EDNF rate of only $109 per night. This rate is also available for July 29 - August 4 if you want to add extra vacation time to your trip. As we book our speakers, we will update you. You can also contact the Conference Director, Michele Hegler, at 281-486-5521 or michele. hegler@sbcglobal.net if you have any questions. ■■■

L O O S E CONNECTIONS PAGE SIX • SUMMER 2007

NICKEL ALLERGIES [We included this item because some EDSers have allergies, and the relationship between allergies and EDS has been shown to be significant —Ed.]

The increasingly popular trend of body piercing has led to an increase in allergic reactions to nickel. The most common symptom of a nickel allergy is contact dermatitis. This may manifest in various degrees ranging from minor itching and redness of the skin to the development of blisters at the site of contact. Dermatology nurses play a pivotal role in pre and postoperative assessments, thorough skin assessment, and, most important, patient education related to sources of nickel and complications resulting from long-term exposures. [“Nickel Allergies: Implications for Practice” by Sandra D. Copeland, Susan deBey, & Deon Hutchison; in June 2007 issue of Dermatology Nursing, also at www.dermatologynursing.net.]

PROFESSIONAL ADVISORY NETWORK EXPANDS

DNF is proud to announce the addition of three new members to our Professional Advisory Network (PAN). The newest members are: Howard Levy, MD, PhD; Karen Sparrow, PhD; and Brad Tinkle, MD, PhD. We welcome them for their work and knowledge in the research, diagnosis and treatment of Ehlers-Danlos. ■ ■ ■

EVENTS CALENDAR NOW ON-LINE

s we move along with improvements to our website, we want you to know the Calendar of Events is up and running. We are eager to post your upcoming EDNF meetings, fundraisers and special events. Members can submit events to the calendar by clicking on the “add event” icon along the top of the calendar; one of our web administrators will add your submission to the calendar. When you visit the website, you’ll notice the large number of conferences posted on the events calendar. If you live near one of these upcoming conferences, contact EDNF for the possibility of raising awareness and providing information to the professionals attending the conference. Note that the professional meetings are underlined in red. You will see additional color-coding on the calendar: fundraising events are underlined in blue, local group meetings in green, local and regional events in yellow and national events in purple. ■■■

P.A.N. HINGE INAUGURATED, NOW IN SECOND ISSUE

he PAN Hinge, developed specifically for medical professionals, will Mind-Body Unity be into its second issue in June. We hope to expand delivery of this on-line newsletter to the professionals who manage your health care. Please send their names and e-mail addresses (along with their titles and The Mind is the any other information you have) to Debbie Ignacio, EDNF’s Office Manager. Body talking to Empower yourself by getting this pertinent information to your doctors. ■ yourself.... BOARD OF DIRECTORS It Changes you ANNOUNCEMENTS erri Keyes has resigned from the Board of Directors, and the Foundation and Board wish to thank Terri for her work on EDNF’s ......Listen to what behalf. The Board of Directors also welcomes its newest member, you say Michele Darwin. ■■■

L O O S E CONNECTIONS SUMMER 2007 • PAGE SEVEN

SHARING OUR GOLDEN THREAD STORIES

SERVICE DOGS:

FACT & FICTION FROM A HUMAN PARTNER’S VIEW BY SUE JENKINS, R.N.

ervice dogs generally receive six months to a year of schooling on tasks, obedience and publicaccess manners. Most dogs placed by non-profits since the 1970’s have been trained to assist people who have a wide variety of mobility impairments. The list of tasks included here are a broad sampling of what has been developed over the past quarter century to address daily living needs and safety issues. Your dog can be trained to do the tasks most necessary for you.

of a degenerative disease. Someone considered much more moderately disabled, struggling with the difficulties of living alone, maintaining a job or raising a family could find teamwork with a highly trained service dog to be of enormous benefit in achieving the goal of remaining as self-sufficient as possible. A number of tasks enumerated in this section could empower such individuals to conserve energy, reduce or avoid pain, minimize dependency on loved ones, prevent injuries or get help in a crisis. Remember that the dogs will A number of the traditional tasks are not be taught all of these tasks; they will proving useful to individuals with hidden be taught tasks that specifically will help disabilities who have conditions that you to mitigate your disability. cause chronic pain. Creative providers, graduates and owner trainers who are expanding the service dog concept into RETRIEVE-BASED TASKS these additional areas will hopefully share the experimental tasks they develop • Bring portable phone, remote, etc.; with the larger community, providing • Help bring in groceries (canvas bags task training particulars so others can work best; benefit. • Unload suitable grocery items from canvas sacks; One myth that ought to be challenged • Pick up and return dropped items like is the belief on the part of some that coins, keys, etc.; service dogs are only for the most • Bring clothes, shoes, or slippers to severely-impaired or those in end-stage assist with dressing;

• Retrieve purse from hall, desk, dresser or back of van; • Assist in tidying house or yard pick-up by carrying and depositing designated items; • Fetch basket with medication and/or beverage from cupboard; • Seek-and-find teamwork: directing the dog with hand signals, vocal cues, or laser pointer to retrieve an unfamiliar object out of partner’s reach, such as locating a TV remote control, selecting one of several VCR tapes on a TV cabinet, or retrieve an indicated item off store shelves; • Drag cane, crutch, or brace from its customary location to another room; • Fetch walker or wheelchair when outof-reach (provided the dog is large and strong enough; pulling a wheelchair even with no one in it is an extremely difficult task).

CARRYING-BASED TASKS (Non-retrieval) • Move bucket from one location to another, in or outdoors; (continued on next page)

Service dog Baloo retrieves Sue’s cane (left) and brings it to his human partner, Sue (right).

L O O S E CONNECTIONS PAGE EIGHT • SUMMER 2007

(continued from previous page) • Lug a basket of items around the house (weight restrictions apply); • Transport small items downstairs or upstairs to a specific location; • Carry items from the partner to a caregiver or family member in another room; • Send the dog to obtain food or other item from a care-giver and return with it; • Transfer merchandise in bag from a clerk to the wheelchair user’s lap; • Carry mail or newspaper into the house.

• Open drawers using a strap; • Open refrigerator door with a strap or suction cup device; • Shut restroom door that opens outward using a leash tied to the outside doorknob; • Shut interior home and office doors that open outward; • Shut motel room exterior door that opens inward; • Assist in removing shoes, slippers and sandals; • Tug socks off without biting down on foot; • Remove coat, sweater and slacks; • Drag laundry basket through house with a strap (a weight limit of 10% of DEPOSIT-BASED TASKS dog’s body weight applies); • Pull a drapery cord to open or close • Put trash and junk mail into a drapes; wastebasket or garbage can; • Assist in closing motel room drapes by • Deposit empty soda can or plastic tugging on edge near bottom of drape bottle into recycling bin; and backing up. • Assist partner in loading a top-loading washing machine; • Put the dog’s own dirty food bowl in NOSE-NUDGE or the kitchen sink; PAWING-BASED TASKS • Place silverware, non breakable dishes, and plastic glasses in sink; • Nudge cupboard door or drawers • Deposit dog toys into designated shut; container; • Close laundry dryer door with hard • Put prescription bag, mail, or other nudge; items on countertop. • Close dishwasher by putting muzzle under open door and flipping the door shut; TUG-BASED TASKS • Operate door-opener button or pushplate on electric commercial doors; • Open cupboard doors outfitted with • Turn on light switches; attached strap;

Baloo

closes

cabinet

• Help wheelchair user regain sitting position if slumped over.

BRACING-BASED TASKS (No Harness) • Assist partner in walking step-bystep, bracing between each step, from wheelchair to nearby seat; • Position and brace to help partner catch balance after partner rises from sitting; • Prevent falls by bracing on command if the partner needs help recovering balance; • Steady partner getting in or out of the bathtub; • On command pull partner up with a strap, tug-of-war style, from floor to feet, then brace until partner catches balance.

HARNESS-BASED TASKS (Mobility Assistance) These are only appropriate for large sturdy adult dogs with sound joints and, of course, proper training: • Assist moving wheelchair a r o u n d obstacles while on level

in kitchen with a nudge (left) and picks up Sue’s purse (right).

L O O S E CONNECTIONS SUMMER 2007 • PAGE NINE

•

ground, the partner holding on to the harness pull-strap; Brace on command to prevent ambulatory partner from stumbling (using rigid handle); Help ambulatory partner climb stairs by pulling, then bracing on each step (rigid handle or harness with pull-strap may be used to assist partner to mount a step or catch balance); Pull partner out of aisle seat on plane, then brace until partner catches balance (using harness with a rigid handle and a pull strap, or a pull-strap only); Help ambulatory partner walk short distances by bracing between each step using rigid handle. ■■■

Baloo retrieves pills (above) and delivers them to Sue (below).

WHAT IS EVERYBODY WAITING FOR? BY CYNTHIA COLABELLA

ike the wilted flower, a plant needs lots of attention to grow. You must pot it, plant it or just find the right spot. Yes, nature has its own way of caring for plants, but those are usually weeds that happen to take over the garden. So again, if a plant receives the proper nutrients and care, water, sunshine or even shade, it will produce — usually a beautiful bloom. Once that happens, many may say, “Wow, how beautiful.” In other words, they pay more attention to the flower that has come out of that care and attention than to the fact that someone needed to provide the care.

for EDNF. Let it be known that we are here and we have an important message to pass along to so many. What is it that you as an individual can do to help? Tell friends; tell family; tell everyone of our mission. It’s so important. No, don’t say you can’t; we can as a team! Share ideas. Wear a T-shirt, plaster a bumper sticker or carry a key chain with the EDNF logo. Support your local groups and their leaders: each one of them volunteers their time to help you. Most of them, if not all, have EDS. How many times do you ask your group leader how they are doing? Take time to send a donation. Help with making each group a more solid foundation. If you are just one person or one family, remember group leaders are in contact and always willing to help all families. Communicate new ideas. We can become bigger and greater than we have ever been before. MAKE IT HAPPEN… ASK for da’ money…we need the answer to this syndrome.

I was sitting here on what is finally a rainy day in Florida — long overdue, yet not so good for an EDSer. EDSer or not, we must nurture and care for our organization. We must support our tree trunk … as we are the branches that will eventually produce the flowers. No, we can’t do it alone. The time is now! We need the water, the seed, the soil, and the bees. Oh, let’s not forget the sun Let’s be that garden of many and shade. beautiful flowers. L et’s be noticed. Even a dollar can make a I wrote this message this way to difference. Get new memberships; help many understand we seem become more active in local to be at a stand still. Let this be groups. Support your leaders. the beginning of a new chapter They are important. ■■■

“Success is to be measured not so much by the position that one has reached in life as by the obstacles which one has overcome while trying to succeed.” Booker T. Washington

L O O S E CONNECTIONS PAGE TEN • SUMMER 2007

UNDERSTANDING THE SOCIAL SECURITY DISABILITY APPLICATION PROCESS BY MARK C MARTINO

ccording to the Social Security Administration, a normal 20-year-old worker has a three in ten chance of becoming disabled before retirement age; the chances obviously rise for those born with a progressive condition like EhlersDanlos. Still, most of us think, “It won’t happen to me.”

with a compassionate doctor who let me write his letter to Social Security on my behalf, and I made sure that letter was as perfect as I could make it; it explained Hypermobile EDS and its symptoms clearly, and then went into specific detail on the personal tasks EDS no longer allowed me: that my shoulders dislocate from their own weight when I drive, that wet washcloths or towels dislocate While admitting disability to yourself my wrists and fingers, that I had fallen is never easy, applying for disability is a face forward in the street because an truly soul-draining process. Quite apart ankle refused to work, that my brain from the forms and requirements, you forgets to breathe when I am asleep so I are forced to confront your own physical am eternally sleep-deprived. For application information, ask a Social truth; over and over again you have to Security representative for publication describe exactly how inadequate you’ve I was luckier than most, and was 05-10029. The 2008 EDNF Conference, become at handling day-to-day living. approved on my first try without appeal. in fact, will include a presentation by SS It isn’t enough that your disability is I attribute my success to staying focused Administration, followed by one-onemedically obvious to your doctors and on the goal I set for my application: that one consultations, on Thursday, July 31. everyone else around you: you have to no matter which page was chosen, a Watch for more details. convince government bureaucrats that medically-uneducated reader would find you meet the legal requirements and an understanding of the problems EDS Who determines disability? aren’t attempting to defraud Social had caused in everything I do. I urge Security in some way. you to do that as well, by focusing on Disability is determined by your state’s the details of what EDS has taken from disability determination agency. Most Most people find this takes a long time your life. I also urge you to stay balanced Social Security disability claims are first and frequently requires appealing the during the process; when you’re taking processed through a network of local initial decision. It can take a couple of inventory of what you can’t do for the Social Security Administration (SSA) months just to successfully fill out the application, for instance, balance it with field offices and state agencies which are application and pull together all the an inventory for yourself of what you usually called Disability Determination Services (DDS). Unfavorable determinations are appealed in a DDS or by an Applying for disability is a soul-draining process... administrative law judge in SSA’s Office over and over again you have describe exactly how of Hearings and Appeals.

inadequate you’ve become at day-to-day living. proper documents (getting a registered copy of my birth certificate took me three months, for instance). This was a particularly trying time for me; on one hand, I was trying desperately to reconcile myself to EDS and the loss of my life as a musician, trying to make progress in adapting life to my needs, trying to overcome the depression — and on the other hand, writing over and over in great detail how incapable I was in meeting daily challenges. I was blessed

can do. Don’t allow those depressing details to bleed into your personality.

A frequently heard complaint is, “My doctor said I’m disabled. How can Social Security disagree with my doctor?” Your doctor made a medical conclusion, but SSA must reach a legal conclusion. This is the most frustrating dilemma found during disability application, and can seem an incomprehensible distinction. Hard as it seems to believe, there is a lot more to disability than your medical records.

What follows is a brief explanation of how disability is determined, taken from the Social Security Administration’s publications at www.socialsecurity. gov/disability/. You can also call 1800-772-1213 toll-free for information; representatives there will even answer specific questions from 7:00 a.m. to 7:00 First, the SSA representative assigned to p.m. Eastern, Monday through Friday. your case will review your application to

L O O S E CONNECTIONS SUMMER 2007 • PAGE ELEVEN

make sure you meet basic requirements for disability benefits, whether you worked enough years to qualify, and evaluate your current work situation. If you meet the requirements, your application is sent to the Disability Determination Services office in your state, which completes the disability decision. Doctors and disability specialists in the state agency will ask your doctors for information about your condition; they try to consider all the facts. They will use the medical evidence from your doctors and the hospitals, clinics or institutions which have treated you (I suggest including with your application copies of anything you have that specifically mentions your diagnosis, such as reports or invoices that list procedures). They will ask your doctors: • What your medical condition is; • When your medical condition began; • How your medical condition limits your activities; • What the medical tests have shown; and • What treatment you have received. They also will ask the doctors about your ability to do work-related activities, such as walking, sitting, lifting, carrying and remembering instructions. Your doctors will not be asked to decide if you are disabled. If your state agency

needs more information than they can 3. Is your medical condition on find from your records or doctors, the the “List of Impairments”? agency may ask you to go for a special The state determination agency examination. They prefer to ask your has a “List of Impairments” which own doctor, but if the exam has to be describes medical conditions legally done by someone else, Social Security considered so severe they are will pay for the exam and for some of automatically disabling as defined by the related travel costs. law. If your condition or combination of conditions is not on this list, the How do they make the decision? state agency then tries to determine if your condition is as severe as one A five-step process is used to decide if already on the list; if so, they will you are disabled as defined by the SSA. decide that you are disabled. If not, the state agency goes to step four. 1. Are you working? If you are working and your earnings average 4. Can you do the work you did more than a certain amount each before? The state determination month, they generally will not agency will decide if your medical consider you disabled. The amount condition prevents you from being changes each year; see the annual able to do the work you did before. Update of Publication No. 05-10003. If it does not, the state agency will If you are not working, or your decide that you are not disabled. If monthly earnings average the current it does, the state agency goes on to amount or less, the state agency then step five. looks at your medical condition. 5. Can you do any other type of 2. Is your medical condition work? If you cannot do the work “severe”? For the state agency to you did in the past, the state agency decide that you are disabled, your considers whether you would be medical condition must have signifiable to do other work by evaluating cantly limited for at least a year your your medical condition, your age, ability to do basic work activities like education, past work experience walking, sitting and remembering. and any skills you may have. If they If your medical condition is not find you cannot do other work, the that severe, the state agency will state agency will decide that you are not consider you disabled. If your disabled. If you can do other work, condition is that severe, the state the state agency will decide that you agency goes on to step three. are not disabled. ■■■

L O O S E CONNECTIONS PAGE TWELVE • SUMMER 2007

ADVOCACY DRIVES STATE HEALTHCARE REFORM STAFF REPORTS

he active involvement of consumer advocates is critical to protecting or expanding access to health care, a new report from Boston-based Community Catalyst suggests. Funded by the W.K. Kellogg Foundation, Consumer Health Advocacy: A View From Sixteen States (PHP, 168 pages) examined consumer health advocacy efforts in sixteen states and found that while the political environment may vary widely from state to state, an organized consumer voice made a difference in all of them. According to Community Catalyst executive director Rob Restuccia, consumer advocates in Colorado, Illinois, and Massachusetts were the drivers of health policy reform that expanded care for hundreds of thousands; in Mississippi and Ohio, advocates were the linchpins in campaigns to protect thousands from losing access to health coverage.

The study was based on more than two hundred interviews with local and state-level leaders as well as surveys of more than seventy key health advocacy and grassroots organizations. Among other things, it pinpoints specific factors that result in effective consumer advocacy and makes recommendations for developing strong, organized systems of consumer advocacy in all fifty states, where the authors believe health policy changes are most likely to take place. “With more Americans losing or at risk of losing health security every day, creating strong consumer organizations on the ground level in each state would change the whole tenor and outcome of the healthcare debate,” said Restuccia. “It is the missing ingredient to providing all Americans with quality health care, and this report serves as blueprint for how to make it happen.” ■■■

WITH NEW ALLERGENS EMERGING, PATCH TESTING, PATIENT EDUCATION NEEDED [We included this item because some EDSers have allergies, and the relationship between allergies and eds has been shown to be significant —Ed.]

Patch testing is necessary to determine specific allergens causing a patient’s allergic contact dermatitis. As new chemicals are introduced into the environment, additional patch testing is needed to diagnose patient sensitivity to these potential allergens. In the December 2006 issue of Dermatology Nursing, Christen M. Mowad, MD, describes common and emerging allergens that cause allergic contact dermatitis. These include fragrances, botanicals, bacitracin (an over-the-counter topical antibiotic), corticosteroids and cocamidopropyl betaine (a thickening or foaming agent found in cosmetics, shampoos, and other personal care products). Mowad says educating patients on possible sources of allergen exposure, synonyms for the allergens and common uses for the allergens is critical to managing patients and resolving their dermatitis. [“Allergens of New and Emerging Significance” by Christen M. Mowad, MD; in Dec. 2006 issue of Dermatology Nursing, also at www.dermatologynursing.net ]

L O O S E CONNECTIONS SUMMER 2007 • PAGE THIRTEEN

FUNDED BY THE NIH • DEVELOPED AT THE UNIVERSITY OF WASHINGTON, SEATTLE

EHLERS-DANLOS SYNDROME, KYPHOSCOLIOTIC FORM BY RICHARD WENSTRUP, MD & HEATHER N. YEOWELL, P D h

This is extracted with permission from the full paper, copyright 1999-2006 and published by the University of Washington, Seattle, last accessed in April, 2007. We urge you to read the complete text, available at www.ednf.org (Medical Professionals section under Medical Reports and Findings) or at http://www. GeneTests.org. To respond, write editor@ ednf.org; always consult your doctors before making changes in your treatment. — Ed.

Summary Disease characteristics. Kyphoscoliotic EDS (previously known as EDS VI) is a generalized connective tissue disorder characterized by kyphoscoliosis (characterized by progressive deformity of Spine consisting of lateral and posterior curvatures.), joint laxity, weak muscle tone and occasionally ocular problems. Intelligence is normal; lifespan may be normal, but affected individuals are at risk for rupture of medium-sized arteries and respiratory compromise if the kyphoscoliosis is severe. Diagnosis/testing. Kyphoscoliotic EDS is caused by deficient activity of the enzyme procollagen-lysine, 2-oxoglutarate 5-dioxygenase 1 (PLOD1: lysyl hydroxylase 1). This diagnosis relies upon the demonstration of an increased ratio of deoxypyridinoline to pyridinoline

• Progressive scoliosis, present at birth Musculoskeletal or within the first year of life; • Scleral (white of the eye) fragility and • Muscle hypotonia with joint laxity is globe rupture. present in neonates. Muscle weakness is common. Gross motor milestones Minor clinical features may be mildly to moderately delayed, and walking nearly always occurs • Widened, atrophic scars; before age two years. Loss of fine • Features of Marfan syndrome; motor milestones does not occur. • Rupture of medium-sized arteries; • Intellect is unaffected. • Mild to moderate delay of attainment • Thoracic scoliosis is common in of gross motor milestones. the neonate. The curvatures appear during infancy and become moderate The presence of three major clinical to severe in childhood. Adults with features is highly suggestive of this type severe kyphoscoliosis are at risk for of EDS. complications from restrictive lung disease and recurrent pneumonia. In laboratory testing, affected individuals • Clubfoot (equinovarus) deformities can have: are present at birth in about 30% of affected individuals. • Biochemical testing of multiple • Recurrent joint dislocations are a enzymes and telopeptides; common serious problem for affected • An enzyme assay of procollagenindividuals. lysine, 2-oxoglutarate 5 dioxygenase-1 • O s t e o p o r o s i s o c c u r s i n a l l in fibroblasts. It will be below 25% of individuals. normal; • Molecular genetic testing for the Eyes PLOD1 gene. • Ocular fragility is found in only a Molecular genetic testing research minority of individuals. • High myopia (nearsightedness) is Direct DNA. An intragenic duplication common. caused by an Alu-Alu recombination in • Glaucoma and retinal detachment also introns 9 and 16 is the most common can occur. mutant allele, with a frequency of 19%

As in all forms of EDS, a spectrum of severity of symptoms occurs.

Cardiovascular

• Vascular rupture is the major life-threatening complication in this disorder. Both aortic dilation/ dissection and rupture of mediumcrosslinks in urine measured by HPLC, a in 35 families with Kyphoscoliotic EDS. sized arteries may occur. The rate of highly sensitive and specific test. This duplication can be confirmed in progression of aortic root dilation in genomic DNA by PCR using duplicationKyphoscoliotic EDS is not known. specific primers. • Mitral valve prolapse is as common as it is in the general population.

Diagnosis

Major clinical features

Clinical Description

Skin

• Friable, hyperextensible skin, thin As in all forms of EDS, a spectrum of • All individuals with Kyphoscoliotic scars, easy bruising; severity of symptoms occurs. EDS have hyperelastic and easily• Generalized joint laxity; • Severe muscle hypotonia at birth; (continued on top of next page)

L O O S E CONNECTIONS PAGE FOURTEEN • SUMMER 2007

(continued from previous page) stretched skin similar to Classical EDS. • About 60% have abnormal scarring, characterized by thinness and widening. • Moderate to severe bruising occurs in all.

Prevalence

distinguish from muscle hypotonia, Heart Association guidelines for particularly in infants and children. antimicrobial prophylaxis. In Kyphoscoliotic EDS, in which both • Individuals with aortic dilation may hypotonia and joint laxity are present, require treatment with beta blockers the increased range of motion is often to prevent further expansion. striking. Kyphoscoliotic EDS is characterized by having normal deep tendon Prevention of primary manifestations reflexes. • Oral ascorbate (Vitamin C) may improve urinary excretion of hydroxylysine and also improve muscle strength and wound healing. 500 mg per day in young children and up Evaluations at initial diagnosis to to 10 gm per day in adults may be establish the extent of disease beneficial. • Hydration should be maintained to Musculoskeletal prevent oxalic acid nephrolithiasis.

Management

• Kyphoscoliotic EDS is rare; the exact prevalence is unknown. An occurrence rate of approximately 1/100,000 live births is a reasonable estimate. Prevalence does not vary by race or ethnicity. Carrier frequency is • Referral to an orthopedic surgeon for estimated to be 1/150. management of kyphoscoliosis; • Physical therapy evaluation to develop a plan for ongoing therapy to strengthen large muscle groups and prevent recurrent shoulder • Kyphoscoliotic EDS has some dislocation. overlapping clinical features with other forms of EDS, particularly Classic type Cardiovascular and Vascular type. Although all types of EDS have a relatively high risk of • Measurement of aortic root size scoliosis compared to the general by echocardiogram at the time of population, scoliosis in Kyphoscoliotic diagnosis or by age five years; EDS is usually more severe and of • Vigilant observation and aggressive earlier onset than that seen in other control of blood pressure to reduce EDS types. the risk of arterial rupture. Vascular • Most congenital myopathies (diseases surgery is fraught with danger. of skeletal muscle which are not caused by nerve disorders) present Treatment of manifestations with poor muscle tone and increased range of motion of small and large Musculoskeletal joints. Joint laxity can be difficult to • Regular follow-up by an orthopedic surgeon for management of kyphoscoliosis. Orthopedic surgery is not contraindicated in individuals with Kyphoscoliotic EDS and can be performed as necessary. • Physical therapy for older children, adolescents, and adults is common, to strengthen large muscle groups, particularly at the shoulder girdle, and to prevent recurrent shoulder dislocation.

Differential Diagnosis

MALE PELVIS

Surveillance • Routine eye examinations by an ophthalmologist for management of myopia and early detection of glaucoma annually; • Routine examination for inguinal hernia and surgical referral as necessary; • It may be advisable to repeat an echocardiogram at five-year intervals even if the initial echocardiogram is normal.

Mode of Inheritance

• Kyphoscoliotic EDS is inherited in an autosomal recessive manner. • Parents of a proband (“proband” is the first affected family member who seeks medical attention for a genetic disorder) carry a single copy each of the disease-causing mutation in the PLOD1 gene and are asymptomatic. • Siblings of a proband have a 25% chance of being affected, a 50% chance of being asymptomatic carriers, and a 25% chance of being unaffected and not carriers. Once an at-risk sibling is known to be unaffected, the risk of his/her being a carrier is 2/3. • Pregnancy involving an affected fetus may be complicated by premature rupture of membranes. Cardiovascular • Related genetic counseling is recommended. Prenatal testing may be • Individuals with mitral valve prolapse available through laboratories offering should follow standard American custom prenatal testing. ■■■

L O O S E CONNECTIONS SUMMER 2007 • PAGE FIFTEEN

THE SACROILIAC JOINT AS A SOURCE OF

INTRACTABLE LOW BACK PAIN IN EDS PATIENTS BY MICHAEL A. AMARAL, MD, FACS Dr. Amaral is a specialist in the spine and The pain may worsen when rising from a sacroiliac, and he can be reached through www. sitting position. Discomfort with bowel spineandsacroiliac.com. movements or with intimacy may be present. Due to abnormal tension of hler-Danlos Syndrome the piriformis and other muscles at the (EDS) is a genetic defect of the sciatic outlet, diffuse numbness and/or connective tissues causing, in pain may also be present in the leg. some types, hyperlaxity of the ligaments Sacroiliac pain can become severe and and hypermobility of the related joints. disabling if not treated.

The sacroiliac joint is located in the low back, between the spine and the hip joint. It normally does not move much. Sacroiliac pain is believed to be secondary to instability of the joint, a condition frequently called “sacroiliac dysfunction” or “sacroiliac instability” in the literature.

The main role of the physical examination is to rule out other problems usually originating in the hip joint, the lumbar spine or the surrounding soft tissues (i.e. muscle strains which are the most common cause of low back pain). The two tests that appear to be the most reliable are:

In non-EDS women, the ligaments may have become lax from childbirth and then never returned back to normal. A sudden movement then causes the joint to go out of position (subluxation) with resulting pain. Younger women may develop sacroiliac problems as a result of sport or other injuries. The condition also occurs in men, but less frequently and usually from more severe injuries. In the general population, sacroiliac dysfunction represents 15 to 22% for all people with low back pain, so it is relatively common.

1. Exquisite tenderness to palpation over the sacroiliac region reproducing the patient’s symptoms, and 2. The Fortin test, where the patient points to the sacroiliac region as the area of maximum pain.

The exact incidence is unknown in EDS individuals. However, because of the ligament laxity seen in EDS, it is probable that sacroiliac problems are more frequent than in the general population. The pain is often unilateral, in the posterior sacroiliac and buttock region (but may also be bilateral) and radiates into the thigh, knee and occasionally the whole leg, mimicking sciatica. Some relatively frequent symptoms are: 1. Increased discomfort with a sustained position, even when lying down, 2. Discomfort with stair and/or hill climbing, and 3. Pain radiating to the groin region.

X-rays and other imaging studies (such as CT or MRI scans) cannot demonstrate sacroiliac dysfunction. However, they may be used to rule out other conditions that can affect the joint (such as inflammation, infection or tumor) or problems originating in the spine (such as arthritis or disc herniations). Diagnostic injections (under x-rays for localization) have been considered to be the gold standard of diagnosis. However, this is not a perfect science: a false negative (patient not responding to the injection even though they have the problem) or a false positive test (patient responding to the injection, even though sacroiliac dysfunction is not the cause of pain) may happen. A false negative test may occur if the numbing medication spills into the pelvis when the thin anterior capsule of the joint is ruptured. A false positive test may occur if the numbing medication spills toward the nearby nerve roots and numbs an irritated nerve root which is the real cause of the pain.

In the non-EDS population, sacroiliac dysfunction is associated with a “piriformis syndrome” about 40% of the time. The piriformis is a small muscle in the buttock that stabilizes the joint. When irritated, it causes pain in the buttock. The piriformis muscle also happens to overlap the sciatic nerve and can also cause sciatica pain down the leg. This is often mistaken for sciatica due to a pinched nerve root in the spine. The problem is in fact secondary to a tightening of the muscle and its tendon. It is therefore unclear if this would occur to a significant degree in EDS individuals because of the laxity seen in the tendons. This has simply not been studied to date. Treatment for this related condition may require injections if conservative treatment with physical therapy doesn’t work. The surgical treatment which involves the division of the muscle or its tendon might affect the stability of the hip joint in an EDS individual and would not be recommended at the present time. Unless the clinician specifically checks for sacroiliac dysfunction and piriformis syndrome, the physical examination may turn out to be normal and some patients may be told that nothing is wrong with them. In the general population, over 90% of patients will improve with non-surgical treatment which usually consists of exercises and manipulations to stabilize the joint. Injections (usually including a numbing medicine and derivatives of cortisone) can also be used. It is unclear how much those measures would work in EDS individuals but should be tried before surgery is considered. Prolotherapy is a non-conventional treatment where an irritant substance is injected in the ligaments to tighten them. To the author’s knowledge, there has been no study of the effect of those irritants on EDS affected ligaments and, (continued on top of next page)

L O O S E CONNECTIONS PAGE SIXTEEN • SUMMER 2007

(continued from previous page) therefore, this treatment modality cannot be recommended at this time. For those remaining symptomatic despite conser vative treatment, minimally-invasive surgery would be the appropriate next step. As the effects of sacroiliac stabilization on the surrounding joints is unknown in EDS individuals, only fixation of the joint is recommended as it can be reversed if unacceptable stress occurs at the level of the hip joint or at the lumbo-sacral junction of the spine. The procedure is done percutaneously with two titanium non-magnetic screws (usually 35 to 45 millimeters long) being placed across the joint under x-rays (and under general anesthesia). The procedure usually lasts less than an hour (for one side). Although this can be done as a same day procedure, the patients are usually kept overnight. In the general population, about 80% of patients experience a significant improvement. There are no sacroiliac EDS surgical series to date but, as the problem is due to the same hyperlaxity of the sacroiliac ligaments both in EDS and non-EDS individuals and as the surgical treatment bypasses the ligaments all together by directly fixating the joint, outcomes would be expected to be similar. So far, our (limited) experience with EDS patients seems to confirm this. ■■■

ASTHMA AND AIRWAYS COLLAPSE

IN 2 HERITABLE DISORDERS OF CONNECTIVE TISSUE BY A W MORGAN, S B PEARSON, S DAVIES, H C GOOI & H A BIRD This abstract is from http://ard.bmj.com, the website of Annals of Rheumatic Diseases, copyright © 2007 BMJ Publishing Group Ltd. & European League Against Rheumatism. Its inclusion is not meant in any way to endorse the research. The extended report was published on-line April 5, 2007 and the abstract was last accessed in May, 2007 — Ed.

Abstract Objectives: This study investigated the clinical impression that there was an increased prevalence of respiratory disorders in both the hypermobility syndrome (HMS)/ benign joint hypermobility syndrome (BJHS) and Ehlers Danlos Syndrome (EDS), compared to the normal population.

Methods: A questionnaire was distributed to 509 subjects (221 healthy controls, 126 HMS, 162 EDS) that documented respiratory symptoms and previously diagnosed respiratory and atopic disorders. A subgroup of 157 responders underwent full clinical and serological assessments and 57 subjects were assessed physiologically.

Results:

FEMALE PELVIS

A significant increase in the frequency of a wide range of respiratory symptoms and reduced exercise tolerance was observed in subjects with both HMS and EDS compared to controls. In particular, there was an increased prevalence of asthmatic symptoms (HMS: OR

2.4, 95% CI 1.4-4.1, P=0.002; EDS: OR 3.1, 95% CI 1.8-5.2, P<0.001) and atopy (HMS: OR 2.7, 95% CI 1.6-4.5, P<0.001; EDS: OR 2.6, 95% CI 1.6-4.4, P<0.001), which was subsequently confirmed by clinical assessment. Pulmonary physiological studies revealed increased lung volumes, impaired gas exchange and an increased tendency of both the lower and upper airways to collapse.

Conclusions: We have demonstrated, for the first time, that individuals with HMS/ BJHS and EDS have respiratory symptoms in association with various pulmonary physiological abnormalities. The increased prevalence of asthma may be due to linkage disequilibrium between the genes causing these conditions or a function of the connective tissue defect itself. In the non-asthmatic population, changes in the mechanical properties of the bronchial airways and lung parenchyma may underlie the observed increased tendency of the airways to collapse. ■■■

“Worr y affects the circulation, the hear t, the glands, the whole nervous system, and profoundly affects heart action.” Dr. Charles H. Mayo

L O O S E CONNECTIONS SUMMER 2007 • PAGE SEVENTEEN

SOUTH BEND TRIBUNE

FEATURES EDNF DOCTOR BY DAVID RUMBACH, SOUTH BEND TRIBUNE STAFF WRITER

eople living in South Bend, Indiana know more about EDS thanks to a feature story about Dr. Mark Lavallee (member of EDNF’s Professional Advisory Network) published in the South Bend Tribune on March 14, 2007. Authored by David Rumbach, a staff writer for the paper, the story briefly described Ehlers-Danlos and Dr. Lavallee’s personal history with EDS: “I must have had a thousand stitches growing up. I’d bump into a coffee table and need stitches.” The Memorial Sports Medicine Institute that was founded by Dr. Lavallee is mentioned before the article turns full attention back to EDS, and Dr. Lavallee’s efforts in treating patients: “Primary care involves helping people improve their general health, manage their pain and stabilize their joints with exercise to limit further damage, Lavallee said.” Ciara Sentelik, a 17-year-old patient from Georgia, contributed discussion about the difficulty in finding diagnosis and treatment. The South Bend Tribune also interviewed Terry

Olson, a physical therapist who teaches EDSers “ways to lift weights that reduce stress on their stretchy tendons while building enough muscle to stabilize their joint.” Dr. Michael Yergler detailed some of the procedures he has developed in over 30 EDS orthopedic surgeries (which can also be found in EDNF’s general surgical recommendations). “He and Lavallee are, essentially, making up some new medicine, [Yergler] said. “‘There are no studies to back up these concepts,’ he said. ‘There’s not much literature at all on EDS.’” The full story can be read at http:// www.southbendtribune.com/apps/ pbcs.dll/article?AID=/20070314/ Lives08/703140448. ■■■ [It is a hopeful sign of the exciting period we live in, that research on EDS is increasingly substantial and no longer hard to find, even from the perspective of a few months later than this article. Let’s also be hopeful that we can find the funding to nurture this trend and to pass on the knowledge — Ed.]

CHRONIC PAIN MAY DIM MEMORY [This story might be of interest to some EDSers, because the link between pain and EDS is significant. It is not meant to endorse the research or the publication it appeared in —Ed.]

Chronic pain may distract the mind, hampering the memorymaking process, according to a new Canadian study. Learning more about chronic pain’s effects on mental skills such as memory may one day lead to new treatments, note the researchers, who included Bruce Dick, PhD, of the University of Alberta. They studied 24 adults with chronic pain who were in their mid- to late 40s, on average. The patients’ pain had lasted for at least six months. Their pain score was at least 4 on a scale ranging from 0 to 10, with 0 indicating no pain and 10 indicating the worst pain imaginable. The patients, who were being treated at the university’s Multidisciplinary Pain Centre, took memory tests twice -- once after getting a pain-relief procedure such as an epidural injection, and on another day when they hadn’t had a recent painrelief procedure. The memory tests involved verbal memory (remembering specific words from sentences) and spatial memory (remembering how the letter “J” was shown on a computer screen). Two-thirds of the patients performed worse on the tests on the days when they hadn’t had a recent pain-relieving procedure. Spatial memor y w as particularly tricky for them, the study shows. The results didn’t seem to be tied to the patients’ sleep problems, psychological distress, or age, note the researchers. “Our findings suggest that pain may disrupt the maintenance of the memory trace that is required to hold information for processing and to later retain it for storage in longer-term memory stores,” write Dick and colleagues. [Dick, B. Anesthesia & Analgesia, May 2007; vol 4: pp 1223-1229. News release, University of Alberta.]

L O O S E CONNECTIONS PAGE EIGHTEEN • SUMMER 2007

LOCAL GROUP REPORT

uring May, the local groups are involved in a variety of activities for EDS Awareness Month. The awareness events included taxi toppers about EDS, posters about EDS for physicians, schools, and the general public, participation in walks/fundraisers, distribution of the Public Service Announcements to radio stations, media interviews and many others. This is the one time of the year that all local groups and individuals join together in efforts focused on making communities everywhere aware of Ehlers-Danlos syndrome. Last year’s Awareness Month was a great success; we are looking for May, 2007 to have been even bigger and better! If there is not a local group in your community and you would be interested in organizing one, please contact the Director of Local Groups, Charlotte Mecum, at 336776-3060 or charlotte.mecum@gmail.com. You can be instrumental in changing the lives of individuals and families dealing with EDS by providing them the opportunity to meet with others who are living with EDS, to share information, support and understanding. ■ ■

ACR/ARHP CONFERENCE IN WASHINGTON, DC BY MARGARET “MAGS” FOOTE

DNF was granted the opportunity to reach the nearly 13,000 attendees of the ACR/ARHP Annual Scientific Meeting in Washington DC, November 10-15, 2006. Through the generosity of Tamara Liller, a representative of EDNF was invited to distribute literature on Ehlers-Danlos Syndrome. Ms. Liller is President of the National Fibromyalgia Partnership (NFP), who included in their exhibit materials her article on “Joint Hypermobility and Fibromyalgia” (reprinted from Fibromyalgia Frontiers, Vol.12, No.1). Margaret Foote from the EDNF Northern Virginia Group tended the NFP Booth for two days to distribute both NFP and EDNF materials (including the General Patient Brochure and the 2005 MRG) to the thousands of rheumatologists in the Washington Convention Center’s exhibit hall. This year’s ACR/ ARHP Annual Scientific Meeting will be in Boston, November 6-11. ■■■

BY CHARLOTTE MECUM Alabama Alabama Group* • Kelly Tinnon, President, glueless@comcast.net, 256-399-4068 Arizona EDNF Action Association of AZ • Vicky Halleck, Organizer, ednfvicky@hotmail.com, 928-830-0011 Phoenix Metro Group* • Jennifer Scherr, President, jmgrimse@yahoo.com, 623-925-8708 California EDS Advocates of Northern CA* • Maggie Buckley, Pres., maggie_buckley@yahoo.com, 925-946-0384 Group of Greater San Diego* • Grace Berardini, President, gwranch@cox.net, 760-599-9478 Online Information Group* • Liza Sauls, President, thing1973@aol.com, 909-944-6778 San Fernando Valley Branch* - Shari Gamson, President, sfvbranch.ednf@gmail.com, 818-757-7355 Connecticut CT EDS Support & Awareness Group • Tara Lopes, Orgnz., yoursecretary@sbcglobal.net, 860-749-6003 Western CT EDS Support Group* • Sandra Buscher, Pres., universalm@comcast.net, 203-798-9401 Florida Central Florida Crackers Group • Cynthia Colabella, Pres., zoomzoom@thevillages.net, 352-735-1853 Emerald Coast Group* • Sue Jenkins, President, 1suejenkins@earthlink.net, 850-729-2882 South Florida EDS Group • Linda Simmons, Organizer, southfloridaeds@bellsouth.net, 954-434-1792 Georgia Atlanta Area Support Group* • Renee Hutchings, Pres., hutchingsrenee@hotmail.com, 404-610-0041 Indiana Michiana Branch* • Pam Malenfant, President, info@michianaednf.org, 269-429-8110 Kansas Mid Kansas Connection • Nathifa Love, Organizer., luminations@gmail.com, 316-944-7520 Maryland Baltimore Metropolitan Branch* • Margaret Foote, ednfnorthernvirginia@comcast.net, 703-683-9637 DC Metro Charter* • Sheri Collins, President, ipassoc@comcast.net, 301-570-5718 Massachusetts Eastern MA EDS Group • Rachel Donlan, President, easternmasseds@yahoo.com, 781-848-1341 Michigan Ann Arbor EDNF Group* • Katie Kerschbaum, President, info@a2-ednf.org, 734-741-5288 Minnesota Twin Cities EDS Support Group • Erica Sonnier, Organizer, twincitieseds@gmail.com, 651-458-4165 Missouri St. Louis Connection Group* • Stephen Bell, President, ehlersdanlos@charter.net, 314-322-1214 Nebraska Nebraska Group* • Linda Neumann-Potash, President, loosejoint@aol.com, 402-934-5908 New Jersey North Central NJ Group* • Lisa Schoenberg, President, lisa.cherry2sky@gmail.com, 732-566-1218 New Mexico NM Connects EDNF Group* • Angel Denardi, President, nmconnect@yahoo.com, 505-690-1690 New York New York City Group* • Jacqueline Cox, President, eds.nyc@gmail.com, 212-987-9821 Thousand Island NY EDS Group • Jo Ann Reff, President, crafty444@hotmail.com, 315-639-3218 Western New York Branch* • Dawn DeWein, Co-President, dmdewein@yahoo.com, 716-688-8291 Lynda Pixley, Co-President, lyndapixley@earthlink.net, 716-791-3049 North Carolina Piedmont Triad Branch* • Angie Smith, President, piedmont_ednf@yahoo.com, 336-694-9553 Oregon Pacific Northwest Group • Susan Burkett, President, sburkett@careerdirectionsnw.com, 503-234-7289 Rhode Island Southern New England Connections* • Karen Ferris, President, karenf30@verizon.net, 401-683-2680 Texas Dallas-Fort Worth EDS Group* • Julie Bentler, President, dfwedsgroup@verizon.net, 469-964-0859 Greater Austin EDS Group • Wilma Steenbergen, Pres., wilmasteenbergen@yahoo.com, 512-401-9710 Greater Houston Branch* • Michele Hegler, President, michele.hegler@sbcglobal.net, 281-486-5521 San Antonio EDS Group* • Irene Pierce, President, gizpie@sbcglobal.net, 210-392-3880 Virginia Northern Virginia Group* • Margaret Foote, Pres., ednfnorthernvirginia@comcast.net, 703-683-9637 Richmond & Central Virginia Group* • Diana Harris, Pres., dianamharris1@comcast.net, 804-272-6701 *Chartered Groups

EDNF 2007 MEMBERSHIP FORM

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