Summer 2009 - The Ehlers Danlos Society

L O O S E CONNECTIONS
Invisible Sara Strecker......................................................................................................................... 2
From the Editor’s Desk Barbara Goldenhersh, PhD............................................................................ 3
The Month of May and the Blooms of Summer Ali Ruffalo............................................................. 4
Medical Research Article: Hypermobility EDS Howard P. Levy, MD, PhD......................................... 6
Effects of Ehlers-Danlos Syndrome Barbara Pilven.......................................................................... 11
A Primer on Massage Felicity Fisher................................................................................................. 13
The Alexander Technique: My Good Fortune Ann Rodiger............................................................. 15
Cyberchondria and How to Avoid It.............................................................................................. 17
Headaches: Descriptions and Triggers Sue Jenkins & Beth Sauer...................................................... 19
How Long Do Medications Last...................................................................................................... 21
May 2009 Awareness Events........................................................................................................... 22
Kansas Local Group, San Fernando Valley Branch, Western Connecticut Local Group,
Local Group of Greater San Diego, Piedmont Triad Branch, and more!
Publisher’s Index and Biographies.................................................................................................. 27
The Magazine About Living With EDS
Summer 2009
SUMMER 2009
PAGE Invisible
In honor of May­­ “EDS Awareness Month”
I
go through my life invisible. No one knows
my name or knows anything about me, yet
I am still there. I am the ache in the morning
when sore joints, displaced during a ragged
night of sleep, make themselves known. I am
the ripped skin and the dislocated hip. I am
Ehlers-Danlos syndrome.
There are those who know me personally, who
know my ins and outs — know me intimately.
Many who know me, however, do not know
my name nor what to do with me; all they
know is the discomfort that I cause. They go
through their lives with the aches, calling them
different names — Arthritis, Growing Pains,
Aging — never calling me by my true moniker.
I am the great pretender. I am rare enough that
I hide in plain sight, because everyone sees me,
but no one knows my identity.
But, I want my name to be known. I don’t
want to be invisible any longer. If you know
who I am, you can work with me so there is less
discomfort, instead of just pushing through.
I don’t want to be misdiagnosed as growing
pains; I want my name to be paid attention to.
And when you don’t call me by my true name,
I just scream louder. The mild aches become
sharp pains: Listen to me! I want you to know
who I am, I want you to know the real me. I
want your family and friends to call me by my
true name.
I am tired of being erroneously named. I am
tired of being mistaken for a horse, when I am
a zebra. Look at the horses closely and you will
come to see my hidden stripes. You can find
them if you look hard enough — find me in
the densest herd. Even the wind shows itself
sometimes, you just have to look for it.
Shout my name from the rooftops! Tell the
doctors my origins! I have been on the sidelines
too long. It’s time for my coming out party.
Tell your friends what I stand for — that way
no one suffers needlessly, that way I don’t have
to scream to get my name heard. I want every
medical student to know me intimately, not
just from some textbook: every doctor to know
how to diagnose me. I don’t want to be the
rare zebra anymore; I want to be thought of
when the hoof beats are heard in the distance.
The cloak of invisibility can be lifted if you are
brave enough to let me have my name.
I am Ehlers-Danlos syndrome and I warrant
being noticed!
Sara Strecker
SUMMER 2009
PAGE FROM THE EDITOR’S DESK
SUMMER 2009
W
e have seen May “EDS Awareness
Month” taking root and growing. States
are using our proclamation to spread the word.
But what does “Awareness” really mean? This
year’s EDNF theme of Advocacy may fit the bill,
for as we spread awareness, we are advocating for
better care, more engaged and knowledgeable
medical professionals and legislative changes
that improve our lives.
You will note that this issue provides articles
that help those with EDS advocate for better
care and understanding through awareness.
EDNF has worked tirelessly to develop properly
vetted, accurate and current materials in
order that those of us with EDS are better able
to advocate for ourselves. We are often the
educator of our families and friends and more
importantly, our doctors. This must be done
with care: providing the newest materials in
order that doctors learn from and believe in
that material. EDNF provides these for you.
helped in the writing of our vascular materials.
He called to tell me that we would be saving
lives with these materials, that we had done
a fantastic job and actually thanked us for
allowing him to have a part in their creation.
Now that is a wonderful accolade! And it fits
right in with the support we received from
Mayo Clinic. Mayo supported EDNF’s efforts
to create those materials because of the quality
of the content and the people we would reach.
Receiving this validation and acknowledgement
from a well-renowned medical facility brings
opportunities yet untold. This is very exciting
and offers the potential to educate young doctors
in recognizing EDS from the start, which may
alleviate the long wait for diagnosis many of us
have experienced, the merry-go-round of seeing
multiple specialists as we search for answers. The
possibilities are endless. While we are thankful
for their efforts, it must begin with you.
How does EDNF help make you better able
to do this: the many publications to spread
around; make copies of So You Think You Might
Have EDS; forward recent research on our
medical professional pages; have your doctors
email [email protected] to receive The Professional
Advisory Network Hinge. My internist recently
commented on how much she has learned
from these materials and how much she enjoys
The PAN Hinge and the other EDNF-created
brochures I provide her. Start small and keep
going. EDNF enables you to be the educator,
the promoter of awareness.
This issue of Loose Connections, provided in
a new format, offers new capabilities such as
all members receiving them at the same time,
ability to enhance our imaging and color
choices, provides flexibility in the length of
articles and research, allows readers to resize
the page display for easiest reading, and saves
on the high cost of four mailed issues, allowing
production of materials for our medical
professionals. EDNF has, and will continue, to
create the information for you to disseminate.
Now it is up to you. Advocate for your care
throughout the year. Opportunity awaits every
time you leave your home; as you make others
aware you become your own advocate.
And to share a bit of special kudos: I had a
delightful call from one of the experts who
Barbara Goldenhersh, Ph.D.
SUMMER 2009
PAGE THE MONTH OF MAY AND
THE BLOOMS OF SUMMER
M
ay was “Ehlers-Danlos Awareness
Month.”
Some readers are perusing Loose Connections
magazine for the first time; some of you have
been with us from the beginning. All are reading
it in a brand new format.
EDNF has come a long way from when it was
first established, more so in the last year.
Efforts from those who have been with the
organization since its inception combined
with the new or nearly new, are bringing EDS
to the public through the magazine, website,
The Hinge, producing up-to-date materials and
appealing to our State Congressman to officially
declare May “Ehlers-Danlos Awareness Month.”
One day, with hard work and continued effort,
there will be a 5K “To End EDS”, and a national
day devoted around the country, the world, to
raise financial support to obtain a cure. While
we wait patiently for this to occur, while I still
live with pain, and struggle with despair and
joy, I am thankful for what we already have
within our reach — people who saw a need and
are fulfilling it.
While I normally devote my article to living
with the daily struggles of EDS, I want to take
this opportunity to thank everyone who has
participated in bringing EDS awareness to those
within their reach. I believe the ripple effect will
continue in ways unseen, but felt, reaching the
weariest of ears, the most overwhelmed and
pained. The ripple starts with each of us, but it
began in 1985.
Without EDNF, we would not have the
resources now available to us. Beyond all the
printed materials we share with our medical
professionals, these include physician names,
places to go for clinical studies and up-todate medical care, even just offering us a list
of common signs and symptoms. Without the
inception of EDNF, many of us would still be
struggling for a name, a place to go, someplace
where simply, someone understands.
On a personal note, if I had not been experiencing another sleepless night, pained and
frustrated, I would not have found EDNF. Without the resources, compassion, and steadfast
hope that one day, no one should suffer from
this disorder, I would not be writing this.
As I started experiencing symptoms chronically, and more intensely, depression grew. Doctor
shopping searched for an answer, not for medicines. If you name a specialty, I saw a physician
in that arena. I visited two major medical clinical hospitals in my state and still, they missed
my EDS. I was on a downhill slide with no hope
of climbing back up. While this sounds vague,
for personal reasons it should remain so. If I
had not found the message boards on EDNF, I
would not be writing you now.
The work done within EDNF is not an easy
task, and no one has asked to be recognized
individually. EDNF works as well as it does
through a group effort, combining the natural
gifts of each person. Most of the volunteers
give hours each day toward publishing the
quarterly magazine, bringing you The Hinge
and maintaining the Internet site. What may
surprise you is how many on the board or
contributing in other ways have been diagnosed
with Ehlers-Danlos themselves.
I have contributed on a small level, distributing
MRGs and the new vascular materials to
SUMMER 2009
PAGE dentists, hospitals, the local Hospice and I am
in awe of the dedication granted to a disorder
still struggling to be recognized. EDS has been
among us far longer than it has been named. I
think taking time to thank everyone who helps
EDNF by all of us held within the grasp of EDS
is called for.
Spread the word, become part of the advocacy
for awareness efforts. Order the MRGs, do
without eating out to cover the cost if necessary,
but please, I ask, do something to make sure
everyone is heard and each of us, in our own
way, contributes to EDNF.
Take a moment to look at the names on the
board, those on the newsletter and on the PAN.
However you feel is best for you, please, take a
moment to reflect on what these individuals
own lives must be like, and just how EDS affects
them? I ask everyone to write a note, email
everyone on your mailing list, and shout out
a “Thank You” to the volunteers not only on
the forefront but also behind the scenes. Think
about how the information relayed to you via
print and online comes your ways.
We need their resources and efforts, their
hours that are not always tireless, their time
taken from somewhere else. Today, even if you
already have before, please take a moment to
jot a thank you letter; mail it to the Los Angeles
office and post it on the message boards.
The eyes and ears and tired fingers behind the
Ehlers-Danlos National Foundation are weary
and allot time away from family and work to
help make EDNF what it is — an organization
that refuses to quit, people who wake every
day hoping this is the day someone comes
forth with a new approach. Those without EDS
somehow feel our pain offering their expertise
helping strangers, friends, family members,
young and old, you and I, with their efforts.
As May comes to a close I look forward to the
warming days. I also offer a prayer for hope and
relief for everyone who knows all too well how
Ehlers-Danlos comes into our lives and changes
them. For the caregivers, for the sufferers, for
the contributors, volunteers, nurses on call
and physicians helping EDNF reach higher and
higher, thank you. As summer begins, let hope
bloom with it.
In memory of and dedicated to the founder,
Nancy Hanna Rogowski.
With hope and gratitude,
Ali
SUMMER 2009
PAGE Ehlers-Danlos Syndrome,
Hypermobility Type
By Howard P. Levy, MD, PhD
Department of Medicine, Division of General
Internal Medicine and
McKusick-Nathans Institute of Genetic Medicine
Johns Hopkins University School of Medicine
Summary
Disease characteristics. Ehlers-Danlos syndrome (EDS), hypermobility type is generally
considered the least severe type of EDS, although
significant complications, primarily musculoskeletal, can and do occur. The skin is often soft
or velvety and may be mildly hyperextensible.
Subluxations and dislocations are common;
they may occur spontaneously or with minimal
trauma and can be acutely painful. Degenerative
joint disease is common. Chronic pain, distinct
from that associated with acute dislocations or
advanced osteoarthritis, is a serious complication of the condition and can be both physically and psychologically disabling. Easy bruising is common.
Genetic counseling. HEDS is inherited in an
autosomal dominant manner. Most individuals
diagnosed with the syndrome have an affected
parent. Each child of an individual with EDS,
hypermobility type has a 50% chance of inheriting
the disorder. Prenatal testing is not available.
Clinical Description
Natural History
Clinical variability is substantial. Most individuals who seek medical care are female. Pain and
major joint complications appear less common
among affected males, or perhaps simply not
reported.
Skin. The skin is often soft or velvety and may
be mildly hyperextensible. Piezogenic papules
(small herniations of subcutaneous fat) leak
through the underlying dermis of the heel when
standing but are rarely painful.
Musculoskeletal
• Joint laxity. Subluxations and dislocations are common and represent the
major manifestation of the condition.
• Osteoarthritis. Degenerative joint disease occurs at a younger age than in the
general population, possibly because
of chronic joint instability resulting in
increased mechanical stress.
• Osteoporosis. Bone mineral density in
individuals with EDS, hypermobility and
classic types may be reduced by up to 0.9
standard deviation compared to healthy
controls, even in young adulthood [Dolan
et al. 1998].
Pain. Chronic pain, distinct from that associated with acute dislocations or advanced osteoarthritis, is a serious complication of the condition and can be both physically and psychosocially disabling [Sacheti et al. 1997]. Affected
individuals are often diagnosed with chronic
fatigue syndrome, fibromyalgia, depression,
hypochondriasis, and/or malingering prior to
recognition of joint laxity and establishment
of the correct underlying diagnosis of EhlersDanlos syndrome. At least two recognizable
pain syndromes are likely:
• Pain or myofascial pain, localized
around or between joints, often described
as aching, throbbing, or stiff in quality,
may be attributable to myofascial spasm,
SUMMER 2009
PAGE and palpable spasm with tender points
(similar to fibromyalgia) is often demonstrable, especially in the paravertebral
musculature.
individuals with EDS, hypermobility (and
classic) type report atypical chest pain,
palpitations at rest or on exertion, and/or
orthostatic intolerance. [Rowe et al. 1999].
• Neuropathic pain, variably described
as electrical, burning, shooting, numb,
tingling, or hot or cold discomfort, may
occur in a radicular or peripheral nerve
distribution or may appear to localize to
an area surrounding one or more joints.
• Aortic root dilatation, usually of a mild
degree, occurs in one-quarter to one-third
of individuals with EDS, classic and hypermobility types [Wenstrup et al. 2002].
One hypothesis is that painful myofascial spasm
occurs in response to chronic joint instability,
with neuropathic pain resulting from direct
nerve impingement (e.g., by subluxed vertebrae, herniated discs, vertebral osteoarthritis,
or peripheral joint subluxations), and/or from
mild-to-moderate nerve compression within
spasmed connective tissues.
Hematologic. Easy bruising is quite common, frequently without obvious cause. Mildly
prolonged bleeding, epistaxis, and menometrorrhagia may also occur.
Gastrointestinal
Gastroesophageal reflux and gastritis may be
symptomatic despite maximal doses of proton
pump inhibitors with additional H2-blockers
and acid-neutralizing medications.
Early satiety and delayed gastric emptying may
occur and may be exacerbated by opioid (and
other) medications.
Irritable bowel syndrome may manifest with
diarrhea and/or constipation, associated with
abdominal cramping and rectal mucus.
Cardiovascular
• Autonomic dysfunction / Postural
Orthostatic Tachycardia Syndrome:
Approximately one-third to one-half of
• Mitral valve prolapse (MVP) was previously considered a manifestation of all
types of EDS, but this has not been confirmed in rigorous evaluations.
Oral/dental. High, narrow palate and
dental crowding are nonspecific features of
most heritable disorders of connective tissue
including EDS.
Periodontal disease (friability, gingivitis, gum
recession) occurs in some individuals with
EDS, is no longer considered a unique subtype
of EDS [Beighton et al. 1998].
Temporomandibular dysfunction (“TMJ syndrome”) is relatively common, and can be
thought of as a specific example of joint degeneration and osteoarthritis.
Obstetric/gynecologic. Pregnancy may be
complicated by premature rupture of membranes or rapid labor and delivery (less than
four hours), but this is less likely than in the
Classic type.
Pelvic prolapse and dyspareunia occur at
increased frequency in at least the classic and
hypermobility types of EDS [Mcintosh et al
1995, Carley & Schaffer 2000].
Psychiatric. Depression is a common complication among all individuals with chronic
pain, including those with EDS.
Fragility of soft tissues with spontaneous
SUMMER 2009
PAGE ruptures or tears of internal organs is, by definition, not a feature of EDS, hypermobility type.
• Acetaminophen — total daily dose from
all sources must be below 4,000 mg; a
higher dose causes liver damage.
Prevalence
The prevalence of HEDS is unknown. Estimates
have ranged between 1:5,000 and 1:20,000 and
depend in part on whether or not the familial
hypermobility syndrome is included.
Treatment of Manifestations
• NSAIDS (nonsteroidal anti-inflammatory
drugs)
• Cox-2 inhibitors (example — Celebrex)
• Tramadol
• Topical lidocaine
Physical therapy
• Skeletal muscle relaxants
• Myofascial release (any physical therapy
modality that reduces spasm) provides
short-term relief of pain, lasting hours to
days. Modalities must be tailored to the
individual; a partial list includes heat,
cold, massage, ultrasound, electrical
stimulation.
Assistive devices
• Braces and splints are useful to improve
joint stability. Occupational therapists
should be consulted for ring splints (to
stabilize interphalangeal joints) and wrist
or wrist/thumb braces. A soft neck collar,
if tolerated, may help with neck pain and
headaches.
• A wheelchair or scooter may be necessary
to offload stress on lower extremity joints.
• Tricyclic antidepressants
• Serotonin/norepinephrine receptor inhibitors (SNRIs)
• Some anti-seizure medications
• Opioids are effective for both myofascial
pain and neuropathic pain, but are usually reserved as long as possible. They can
be administered in conjunction with all
of the above except tramadol.
• Supplemental magnesium and/or potassium
• Glucosamine and chondroitin have not
been studied specifically in EDS, but are
not contraindicated.
Surgery and other procedures
• A waterbed, adjustable air mattress, or
viscoelastic foam mattress (and/or pillow) with multiple pillows may provide
increased support with improved sleep
quality and less pain.
Pain medication. Pain medication is frequently underprescribed, and should be tailored to the individual’s subjective symptoms,
not to objective findings.
• Many individuals will have undergone
several orthopedic procedures prior to
diagnosis. In general, orthopedic surgery
should be delayed in favor of physical
therapy and bracing. The degree of stabilization and pain reduction, overall patient
satisfaction, and duration of improvement are variable, but usually less than
that in individuals without EDS [Aldridge
et al. 2003, Rose et al. 2004].
SUMMER 2009
PAGE • Prolotherapy has not been objectively
studied.
with pro-motility agents (e.g., erythromycin, metoclopramide).
• Anesthetic/corticosteroid injections for
localized areas of pain and inflammation
are often helpful, but cannot be repeated
indefinitely; “dry needling” without injection of any material sometimes provides
similar benefit.
• Irritable bowel syndrome is treated as
usual with antispasmodics, antidiarrheals, and laxatives as needed.
• Anesthetic nerve blocks can provide temporary relief of neuropathic pain.
• Constant intrathecal delivery of anesthetic
and/or opioid medication but should only
be considered as a last resort.
Bone density. Therapy is the same as for
any other individual with low bone density. A
Dexascan is needed biannually if bone loss is
confirmed.
Hematologic
• Easy and spontaneous bruising does not
require treatment.
• For severe bleeding (e.g., epistaxis, menometrorrhagia) or operative prophylaxis,
desmopressin acetate (ddAVP) may be
beneficial.
Gastrointestinal
• Gastritis and reflux symptoms may
require intensive therapy, including proton pump inhibitor twice daily before
meals, high-dose H2-blocker at bedtime
(e.g., famotidine 20-40 mg or ranitidine
150-300 mg), sucralfate one gram four
times daily, and over-the-counter acidneutralizing agents.
• Delayed gastric emptying should be
identified if present and treated as usual
Cardiovascular
• Beta-blockade should be considered for
progressive aortic enlargement. Rarely,
severe enlargement (>4.5-5.0 cm) requires
surgical evaluation.
• Neurally mediated hypotension and postural orthostatic tachycardia are treated as
usual, with sodium and water to expand
the blood volume, beta-blockade, fludrocortisone, and/or stimulants.
Dental
• Orthodontic and palatal corrections may
tend to relapse, requiring prolonged use
of a retainer.
• Periodontal disease should be identified
and treated.
• Temporomandibular joint laxity and dysfunction are difficult to treat. There are no
specific interventions of proven benefit.
Surgical intervention is often disappointing and should be considered only as a
last resort.
Psychiatric
• Validation of the affected individual’s
symptoms can be immensely helpful, as
many with all types of EDS, HEDSrs have
been accused of malingering or diagnosed
with primary psychiatric disorders by previous physicians.
SUMMER 2009
PAGE 10
• Consumer support groups are available
and can be beneficial.
• Depression is a common result of the
chronic pain and other complications.
Psychological and/or pain-oriented counseling can improve adaptation to and
acceptance of these issues and the necessary physical limitations. Antidepressants
are also of great benefit and patients need
reassurance of problems not being written off as purely psychiatric.
Prevention of Primary
Manifestations
Improved joint stability may be achieved by
low-resistance exercise to increase muscle tone
(subconscious resting muscle contraction,
as opposed to voluntarily recruited muscle
strength). Progress should be made by
increasing repetitions, frequency, or duration,
not resistance.
Wide grip writing utensils can reduce strain
on finger and hand joints. Adjustments in grip
frequently result in marked reduction of pain in
the index finger and at the base of the thumb.
Prevention of Secondary
Complications
Calcium, vitamin D, and low-impact weight
bearing exercise should be encouraged to
maximize bone density. A Dexa Scan is needed
biannually if bone loss is confirmed.
The long-term prognosis for aortic enlargement, and therefore the interval for repeating echocardiograms, is currently unknown.
In adults with a normal aortic root diameter,
it is reasonable to repeat the echocardiogram
approximately every five years. In children and
adolescents with a normal aortic root diameter,
it is the author’s practice to repeat every one to
three years until adulthood. If the aortic root
diameter is increased or accelerating faster than
body surface area, more frequent monitoring is
appropriate.
Agents/Circumstances to Avoid
Joint hyperextension must be avoided beyond
normal range of joint extension.
Resistance exercise, including elastic resistance
bands, can exacerbate joint instability and pain.
Isometric exercise can also be problematic if
too much force (resistance) is applied.
High-impact activity increases the risk of acute
subluxation/dislocation, chronic pain, and
osteoarthritis. Some sports, such as football,
are therefore contraindicated.
Chiropractic adjustment is not strictly contraindicated, but must be performed cautiously to
avoid iatrogenic subluxations or dislocations.
Crutches, canes, and walkers should be used
cautiously as they put increased stress on the
upper extremities.
First-degree relatives are each at 50% risk of
having EDS, hypermobility type, and may wish
to undergo formal clinical assessment.
Genetic Counseling
Genetic counseling is the process of providing
individuals and families with information on
the nature, inheritance, and implications of
genetic disorders to help them make informed
medical and personal decisions.
Copyright © 1993–2008 All Rights Reserved University
of Washington, Seattle
SUMMER 2009
PAGE 11
Effects of Ehlers-Danlos Syndrome
I
like to be as honest as possible, so I’ll
begin by saying that both a geneticist who
has seen me once and my rheumatologist who
has seen me twice so far, have said that I don’t
have EDS. The latter, in fact, emphasized the
adjective “benign” in telling me I had joint
hypermobility syndrome, possibly because
he’d noticed my concern at hearing that I was
as flexible as his hypermobile child who was
more than 40 years my junior. However, three
of my doctors who have known me well for
three years to more than three decades have
spoken less definitively.
but it can have serious interactions with other
conditions.
For example: As a small child, unexpectedly
born a month early, I had severe esotropia
(crossed eyes) and had to sleep with my feet
in little white shoes attached to either end of a
steel bar. Corrective eye-muscle surgery when
I was three didn’t cure the strabismus; in fact,
in the last two years I’ve had two surgeries for
consecutive exotropia, which means the eyes
turn out following surgery for in-turned eyes.
My feet and ankles have always turned in, and
at ten, possibly triggered by frequent highIf I’ve learned anything in my 58 years, all impact sports involving kicking, I had severe
that time with more than one chronic medical problems with hereditary lymphedema of the
problem, and at last count, an even dozen lower extremities. In addition, I was always
ranging in severity from occasionally disabling doing odd things with my fingers, which I
to potentially lifelearned pretty early
threatening, it’s that
were substantially more
“The range of effects can
medical
knowledge
flexible than those
changes
constantly,
of most people. I’ve
and we, the patients,
always loved to sit with
be quite disabling even in
are
the
textbook.
my legs all wrapped
No
physician
has
someone who is described around each other and
time to keep up with
one foot resting on top
everything in his or
of the other. Everyone
as mildly hypermobile.”
her own field, and
in school and my
likely does not know
neighborhood as well
everything about the medical situation of a as my family knew I was unusually flexible just
patient he or she has treated for years or even
as they knew that I was a klutz and the last
decades.
one picked for teams in gym class, despite my
dancer’s build.
What’s important to me is that, in speaking to
patients and their families, doctors acknowledge Yet not then nor when I was in high school,
the presence of hypermobility and the range
college or even graduate school did anyone
of effects it can have on a patient, some of know enough to connect the dots, and the thing
which can be quite disabling even in someone I always dreaded most finally happened. Today
who’s described by some physicians as mildly my doctors tell me they’re certain the source
hypermobile. It may be that the disease itself is
of this event is the hypermobility disorder,
not by definition potentially life threatening,
but when I was younger, no doctor or dentist
SUMMER 2009
PAGE 12
realized, or suggested to me or my parents,
that I should be evaluated by a periodontist
in my early twenties when I began having
trouble with, and life-saving treatment for,
bipolar disorder. The treatment which includes
medication that, like at least 400 prescription
and over-the-counter medications, can cause
xerostomia, or dry mouth. Since before that
time, I’d been good about drinking water,
avoiding sugar, and having good basic home
and professional dental care, but a periodontist?
For preventive oral care? In my mid-twenties I
finally had a dentist who told me I had a very
small, delicate mouth and had been brushing
my teeth far too energetically all my life but
even he, as good as he was, didn’t ask me if, for
instance, I had joint problems, to which the
answer would have been yes. Eventually I had
very successful free gingival grafts, but much
later, resorption cost me a lot of my lower teeth
and the work involved in trying to save them
led, not for the first time, to crippling mouth
and jaw pain, which this time was so severe I
couldn’t chew for a year and a half.
My “party tricks” are still numerous: tongue
against the tip of the nose, thumbs against
the forearms, hands on the floor with knees
straight. On a good day I’m as flexible as a
kid or a yoga master, and today is a very good
day, but my hands are stiff and sore and my
left heel and right TMJ hurt. I’m pushing 60,
after all! To me what’s vital is that people not
be dismissed when they talk about their own,
or their children’s, difficulties stemming from
excessive flexibility. There might be times when
we seem to exaggerate the severity of a problem,
but chances are we’re talking that way because
we’re in pain and/or have vivid memories
of recent, disabling pain we don’t want to
experience again, and pain is frightening as
well as frustrating.
Whether or not I actually have HEDS probably
depends on who’s evaluating me. Some
specialists would say HS is a form of HEDS, or
at least that the “S” word in the name merits
more attention than it’s gotten. I think these
are the people who, working with the patients
and their families and friends, should lead the
effort to see that it gets that attention.
Barbara Pilvin
As was mentioned in this article, it is up to the
patient to teach our medical professionals. It is
to that goal that EDNF provides up-to-date
materials for the medical community as well
as allowing doctors to sign up for The PAN
Hinge which will keep them informed on
recent research. Our articles are recent, the
information current. Print out the pieces that
help your doctors understand what you are
dealing with. Bring them the MRGs and other
EDNF offerings. Read and share the article “So
You Think You Might Have EDS”. All is there
for its members. Make a difference in your
lives. — Editor
SUMMER 2009
PAGE 13
The Alexander Technique:
My good fortune
Another in our series of stories from EDNF
members on a unique change having EDS
made in their lives.
M
y EDS story is no doubt very familiar to
you. As an active child with lots of energy
I had more than the typical number of trips
to the emergency room for stitches (mostly on
my shins and chin) and by the time I was ten
had had more tetanus shots than most people
do in two or three lifetimes. I was hypermobile
everywhere and no one knew why. It just
seemed to be the way I was.
could to improve our dance technique. These
classes were amazing for me right from the
beginning. They taught me a way of moving
that gave me the ability to balance in an entirely
new way. This completely changed my way of
approaching my body and movement.
For the first time in my life, I found a sense
of direction through my whole body and an
organization of the parts that allowed me to
move in a much more unified and supported
way. I began to have some control over my
flexibility and balance that didn’t come from
grabbing on to my body and bracing some
parts while allowing others to collapse against
each other. I learned how unaware I was of the
things I was doing that were contributing to
my own imbalance.
Because I loved to move, I easily fell into
studying dance at the University of Oregon
for undergraduate work. I got a wonderful
education and my flexibility served me well. I
was however, “all over
My
good
fortune
the place” with my
“I
am
still
teaching
continued
when
I was
body, basically flailing,
teaching dance at the
and found balancing
and
practicing
the
University of Illinois
on one leg to be a
Urbana in the late ‘70s.
real challenge. One
Alexander
Technique,
I found an Alexander
“position” felt just like
Technique
Teacher
the next and I had a
which
continues
to
be
Training class that was
hard time figuring out
starting up. one of the
where to be with my
my
saving
grace.”
teachers, Joan Murray,
body as it would go just
had been a dancer so
about anywhere. I had
she knew what kinds of demands I was placing
many more choices than the people around
on my body. My teaching schedule permitted
me who were fairly tight and quite jealous of
my flexibility. Everyone wished they had my me to attend the class and become an Alexander
flexibility and couldn’t understand that being Technique teacher myself. The intense study
overly flexible has it’s own set of significant was just what I needed. However, at the time, I
still didn’t know I had EDS.
problems.
During my graduate studies in dance at the
Ohio State University I started taking classes
in the Alexander Technique from the music
school. Several of us were doing anything we
Several years later in the early ‘80s, after I had
started my own AT practice in New York City,
a visiting friend of a student came in for one
isolated lesson. The moment I saw her I was
SUMMER 2009
PAGE 14
shocked. She looked like me in so many ways.
We had similar features and similar bent toes!! I
heard about EDS for the first time and following
her lesson I went to a doctor and was diagnosed
with the hypermobility type of EDS. I learned
that all the dancing I had done (and all that
extra stretching) was contraindicated for EDS.
I was still dancing and decided not to stop as I
love to move so much.
My hypermobility finally caught up with me
about three years ago when my left hip joint
lost its integrity and the bone met the bone in a
painful way that really limited my movement.
I developed a limp, and the rest of my body
started to very noticeably compensate. My
great posture was gone.
Although I stopped dancing about ten years ago,
I continue to do my own movement practices.
Likewise, I am still teaching and practicing the
Alexander Technique, which continues to be
my saving grace. Throughout the years, it has
allowed me to function and move with relative
freedom in a mostly pain-free state, to enjoy
a career in dance, to recover with ease from
my hip replacement and to do all this despite
having EDS. I am grateful for the good fortune
of discovering it!
Ann Rodiger
A. Rodiger © 2009
SUMMER 2009
PAGE 15
Cyberchondria and How to Avoid it
T
he Internet provides us with an bottomless
mine of medical information. But like other
mines, it can be treacherous. Cyberchondria
(hypochondria in cyberspace) is a newly coined
phrase meaning searching the Internet for a
diagnosis of your symptoms — and confirming
your own worst fears.
often on the same page as the scary
information.
• One third of the study sample “escalated”
their searches to track down a serious
illness as the explanation for their symptoms, bringing about severe anxiety.
Perhaps you are not sleeping well and your head
hurts. You open GoodSearch (thus supporting
EDNF with your search) and begin clicking
around. Half an hour later you are on the trail
and the news is ominous. It could be a brain
tumor. You find people diagnosed with brain
tumors talking about symptoms matching
your own. After a few days of nonstop worries,
you see your doctor. You happen to mention
that in hope of curing your insomnia, you
gave up coffee. This is a logical explanation for
your headache: caffeine withdrawal. And your
anxiety is not helping your insomnia. One fact
the Internet failed to unearth is that the odds of
a persistent headache being caused by a brain
tumor are one in 10,000.
When you use the Internet to find out what is
wrong, keep the following in mind:
How common is the problem?
• Millions of us — eight in ten American
adults — look for medical information on
the Internet but according to a 2007 Pew
Internet and American Life Project, the
great majority does not know how to evaluate the quality and validity of the source
such as noticing the date of publications.
The Internet can be a fine source of information,
but don’t believe everything you read. Beware of
personal testimonies and personal stories. They
may be pure fiction — and even if true, may
not apply to you. While the Internet is a poor
tool for self-diagnosis, it can be a magnificent
source of information if you know what the
problem is. It is essential to use reputable
sources that offer recent, vetted information
such as that provided by the Ehlers-Danlos
National Foundation for those with EhlersDanlos syndrome. Investigate the websites of
research centers and other scientific groups.
• People wrongly convinced they have
a serious disorder may turn to quackery — richly promoted on the Internet,
Most important, be certain to make your doctors
your partners in the quest for information. Tell
them what you have found. Provide them with
A recent study by researchers at the Microsoft
Corporation looked at 500 plus adults doing
live searches. They noted:
• You are more likely to find bad news by
fishing around with a search engine than
by looking at a website sponsored by a
major hospital, major foundation or the
government.
• Far more Internet content is indexed to
serious disorders than to a simpler explanation of symptoms. It is easier to find
bad news than good news.
Words to the wise — How can you avoid it?
SUMMER 2009
PAGE 16
the materials developed by EDNF to inform
them, share research articles, and create an
atmosphere in which you work together to
advocate for the care of all those struggling
with EDS.
Cyberspace offers our world a way to connect with
family and friends, find fun information and even
provides educational tools. As with anything,
however, tools misused create problems, so try
to avoid them in the first place. Cyberchondria
has the potential to harm unintentionally — be
cautions and be aware. Stay informed through
reliable, responsible groups to avoid the pitfalls
of Cyberspace. EDNF has struggled to become
recognized among the medical field, promote
the reliability of the information provided:
email our website to everyone you know, and
maybe, you will enable someone else to avoid
Cyberchondria.
Share Your EDS Stories!
As a member of EDNF, EDS has
touched your life in some way:
for yourself and your journey
to diagnosis, for your husband,
sister, or your child. Maybe
some of the puzzling pieces of
your family history have fallen
together, finally making sense
as you review your life.
One of the many challenges
of EDS is how differently it
manifests even within a family.
While many stories have common
elements, each one of you brings
a little different perspective and
experience to our shared histories.
We want to know how you got
here, what your life was like and
how it is now; what has changed,
if anything? What do you hope
for in the future? What may be
a gift that EDS has unexpectedly
brought you? What has EDS
meant for you and your friends
and co-workers, neighbors and
pets? What has EDS cost you?
Please submit your stories to
[email protected]. We will
collect and publish them as part
of an ongoing series. For more
information or questions, please
contact us. We will respect the
privacy concerns of names, places
or dates and will require a release
for any materials published.
SUMMER 2009
PAGE 17
Headaches: Descriptions & Triggers
H
eadaches are a common problem
for many people, including those with
Ehlers-Danlos syndrome. Whether it is a
tension headache, sinus headache, migraine
headache, or cluster headache, determining the
type of headache is to the first step in finding
the proper treatment.
There are also two general types of medication
for treatment — pain relieving and preventative.
Pain relieving medications are taken during
the headache to reduce the intensity of the
pain. Preventative medications, on the other
hand, are taken on a regular basis to reduce the
frequency and severity of the headaches.
Tension Headaches
Migraine Headaches
Tension headaches cause a dull pressure-like
pain over the forehead, temples, and back of
the neck. The pain can last anywhere from 30
minutes to seven days, and varies in severity.
Migraine pain is often described as pulsating
or throbbing, and is felt on one side of the
head. Unlike tension headaches, migraines
worsen with physical activity. They usually
cause the sufferer to become sensitive to light
and sound; they may also cause nausea and
vomiting. Migraine sufferers tend to seek out a
dark quiet room during the attacks, which can
range in intensity from moderate to severe. Left
untreated, the pain can last anywhere from
four hours to three days. Although anyone can
get a migraine headache, they usually strike
between the ages of 10 and 40, often reducing
in frequency and intensity after age 50.
In the past, muscle contractions in the face,
neck, and scalp were thought to cause tensiontype headaches. Today, researchers believe that
the tension headache is the result of changes
in brain chemicals, such as endorphins and
serotonin, which help nerves to communicate.
It is not understood why the amounts of these
chemicals vary. However, several triggers have
been identified.
A trigger can be anything in the body or
environment that starts a reaction. Some
common triggers include: stress, jaw clenching,
poor posture, anxiety, depression, fatigue, eye
strain, alcohol use, working in an awkward
position, and holding a position for a long
time. Keeping a headache diary can be helpful
in determining an individual’s trigger(s) — not
just for tension headaches, but for all types of
headaches. A good diary should not be limited
to the day and time the pain began, but also
includes the activities engaged in throughout
the day and the foods that were eaten. Trigger
avoidance and self-help measures — such as
biofeedback and relaxation — are possible ways
to prevent tension headaches from happening.
The exact cause of a migraine remains unknown.
It is believed that blood vessel expansion, as well
as increased amounts of certain chemicals — in
particular serotonin and dopamine — cause
inflammation and pain.
As with tension headaches, migraines also
have certain triggers that can initiate changes
in the brain. These triggers can include foods
containing monosodium glutamate (MSG),
caffeine, and nitrates. Other common triggers
are exertion, stress, odors, hormonal changes,
and changes in sleep-wake patterns. As with
tension headaches, trigger avoidance can help
to prevent migraines. Several pain relieving and
preventative medications are also available,
SUMMER 2009
PAGE 18
with varying levels of effectiveness depending
on the individual.
Sinus Headaches
Headaches are also associated with sinusitis — a
condition that causes the sinuses to become
swollen and inflamed. A sinus headache feels like a
deep, constant pain in the forehead, cheekbones,
or over the bridge of the nose. The pain may
be worsened with sudden head movements. In
addition to the pain, there may be yellow-green
or blood-tinged drainage coming from the nose
or down the back of the throat. There may also
be fever, facial swelling, and pain in the upper
teeth. Sinus headaches are commonly confused
for other types of headaches. It is important to
remember that if a headache is the only symptom,
it’s rarely sinus related. Sinus headaches may be
treated differently from other types of headaches;
if a sinus headache is suspected, a doctor should
be consulted to ensure proper diagnosis and
treatment.
Depending on the cause, differing medications
may be used. The doctor may suggest overthe-counter medication to treat the pain.
Allergies, colds, bacterial and fungal infections,
structural problems, or an impaired immune
system can all lead to pressure changes within
the sinuses. This pressure change causes a
headache; allergy medication, antibiotics, or
anti-fungal medication may be prescribed.
Surgical correction is sometimes necessary in
the event of underlying structural problems.
Cluster Headaches
Cluster headaches occur in clusters over a period
of time, which give them their name. They are
a rare type of headache that can last from 45 to
90 minutes, and often happen at the same time
each day for four to eight weeks. This pattern
is known as a “cluster period.” Although
they can occur every few months, the cluster
period typically happens twice a year — during
the spring and fall. Sufferers can experience
anywhere from one to eight headaches a day
during a cluster period.
With these headaches, the sufferer becomes
restless; unlike a migraine attack where the
individual tends seek out a quiet, dark room in
which to relax. The pain begins suddenly and is
severe. Often called the worst type of headache
pain, a cluster headache is felt as a piercing
pain on one side of the head, which spreads
from the temple to the eye. The affected eye
may become red, puffy, or watery; the eyelid
can droop, and the sufferer might have a runny
or stuffy nose on the same side of the head.
The exact cause of cluster headaches is
unknown. However, it appears that the
hypothalamus is involved. The hypothalamus,
which controls the biological clock, is located
deep inside the brain. The biological clock is
thought to be involved with cluster headaches
because they occur during certain seasons in a
regular, clocklike pattern.
Triggers may include stress, fatigue, alcohol,
and sleep apnea.
Like tension and migraine headaches,
preventative medications for cluster headaches
can be prescribed. Since cluster headaches begin
quickly, oral pain relievers are not effective.
Because they typically act more quickly, an
inhaled medication or suppositories can be
useful. High flow oxygen is another effective
treatment for some sufferers.
Regardless of the type, no one enjoys suffering
from a headache. While the treatments have
some similarities, correct identification of the
specific type is critical to making an effective
decision. Consult with your family physician
before determining an appropriate treatment.
Sue Jenkins, RN & Beth Sauer
SUMMER 2009
PAGE 19
How Long Do Medications Last?
Here’s the answer from Johns Hopkins.
T
hink of expiration dates — which the
U.S. Food and Drug Administration (FDA)
requires be placed on most prescription and
over-the-counter medications — as a very
conservative guide to longevity. The expiration
date is a guarantee from the manufacturer
that a medication will remain chemically
stable — and thus maintain its full potency and
safety — prior to that date. Most medications,
though, retain their potency well beyond the
expiration date, and outdated medications,
whether prescription or over-the-counter, are
not usually harmful.
In a study conducted by the FDA on a large
stockpile of medications purchased by the
military, 90% of more than 100 medications
were safe and effective to use years after
the expiration date. The drugs in the FDA
study, however, were stored under ideal
conditions — not in a bathroom medicine
cabinet, where heat and humidity can cause
drugs to degrade.
If your medications have been stored under
good conditions, they should retain all or
much of their potency for at least one to two
years following their expiration date, even
after the container is opened. But you should
discard any pills that have become discolored,
turned powdery, or smell strong; any liquids
that appear cloudy or filmy; or any tubes of
cream that are hardened or cracked.
To help maintain potency, store your
medications in a closet or cabinet located in
a cool, dry room. Also, don’t mix medications
in one container: chemicals from different
medications can interact to interfere with
potency or cause harmful side effects. If two or
more medications have been mingled for any
period of time, discard them.
A few medications, like insulin and some liquid
antibiotics, do degrade quickly and should be
used by the expiration date. Also, consider
replacing any outdated medications that you’re
taking for a serious health problem, since its
potency is more critical than that of an overthe-counter drug you take for a headache or
hay fever. If in doubt, consult a pharmacist.
SUMMER 2009
PAGE 20
MAY 2009 AWARENESS
Taking on a Big Challenge
T
he Kansas Local Group, our newest local group sponsored a “Run for EDS” including a fifty
mile motorcycle race with police escorts on Mother’s Day. They raised more than $1,100 and
truly got the word out. The group provided EDNF brochures for attendees and sold Zebra T-Shirts.
This was a well-organized and exciting event. EDNF is very proud of the Kansas EDNF group for
such a great awareness and fundraising event.
FIRST BIKE
Kansas EDS group & Volunteers
SUMMER 2009
PAGE 21
Some of the bikes
some of the prizes donated
SUMMER 2009
PAGE 22
Getting the Information Out
O
n May 12th, the San Fernando Valley Branch of EDNF joined with the local Fibromyalgia
Support Group to participate in an Awareness Day for both organizations.
The groups shared a table at Northridge Hospital Medical Center where each displayed literature.
The EDNF group included all types of MRGs, Vascular Materials, and other EDNF publications.
Several members of our branch were there to support our efforts and to speak with those who
stopped by.
The San Fernando Valley Branch also mailed the new vascular materials to doctors on their mailing
lists. Additionally, members have been visiting Emergency Rooms in the areas surrounding San
Fernando Valley to present the new vascular materials, pain and EDS MRGs to the charge nurses.
They have personally visited nine hospital emergency rooms already. At the Encino Hospital,
many of the nurses came over to read the materials when they heard them talking about EDS. “If
this saves one life in the future, it is worth every minute.”
Members of SFV Branch at Northridge Hospital for our May EDS Awareness event.
Left to Right: Shari, SFV Branch President - Paula, SFV Branch Treasurer - Dean, SFV Branch
At-Large Representative
SUMMER 2009
PAGE 23
“Talk the Talk” for May Awareness
T
he Western Connecticut Local Group determined to “Talk the Talk” as often as they could.
The members use the full name, Ehlers-Danlos syndrome, and agreed to talk to at least three
new people about the syndrome during May or to go into greater depth with those to whom they
have already given information. Members working with adult groups are sharing a May 2009 EDS
Awareness Flyer that was sent to group members.
Western Connecticut Ehlers-Danlos Syndrome Support Group invites everyone out there to “Talk
the Talk” throughout the year. We already “Walk the Walk” every day with EDS! Please write and
share your experiences as you talk with people.
Educating Physician Assistants About EDS
T
he Local Group of Greater
San Diego had an information
booth at the American Academy
of Physician Assistants Conference.
Physician Assistants are licensed
health care professionals, in the
fourth fastest growing health care
profession in the country.
Physician Assistants do physical
exams, prescribe medications, order
and interpret tests, assist in surgery
and make rounds at hospitals and
nursing homes.
Physician Assistants work in more
than sixty different specialty fields,
providing a great venue for our
May Awareness Project. First day
attendance in the exhibitor’s hall
was 6,800, a thousand of them
students. Big thanks go to Walt
Berardini, Grace’s husband, for
stepping up and talking about losing
Grace to EDS and the importance
of accurate information and early
diagnosis for those struggling
with EDS. It was wonderful to see
how much awareness providing
accurate, up-to-date information
to the attendees raised.
SUMMER 2009
PAGE 24
Terri Keyes, Local Group of Greater San Diego, at the American Academy of
Physician Assistants Conference, May 2009
Lani Wilson, Local Group of Greater San Diego, at the American Academy of
Physician Assistants Conference, May 2009
SUMMER 2009
PAGE 25
‘Signs’ of Awareness
F
or years, The Piedmont Triad Branch of EDNF has wanted to find a way to make people aware
of EDS “in a big way.” The cost of having a large ad in the newspaper, on city buses, or on a
billboard had been beyond the means of this relatively small group. This year, however, thanks to
one very kind and interested billboard owner, there is a display (actually two displays) about EDS/
EDNF on a billboard along I-40 East between Winston-Salem and Greensboro, North Carolina.
It is a digital billboard, so there are two very different displays. The billboard changes displays
every ten seconds, alternating between the two messages picture below. According to the North
Carolina Department of Motor Vehicles, over 100,000 people view this billboard each day!
SUMMER 2009
PAGE 26
Thank You Cards and Letters
Sent to Medical Community
L
ooselinks Group of Atlanta met in
May to send letters and cards to member
medical care providers thanking them for
their services. Cards were also sent to other
local members of the medical community
with inserts of EDNF information.
Proclamations Added
A
long with Illinois and Florida, New
Mexico and Rhode Island have been
added to the growing list of states proclaiming
May as EDS Awareness Month.
Newspaper Notice of EDS
Awareness Month
W
e note that three EDNF members
had articles published in newspapers
regarding EDS. There may well be others and
we hope those of you who have facilitated
them will send copies to EDNF.
Michele Darwin was contacted to update her
family story regarding EDS. The article can be
seen through this link: http://www.scntx.com/
articles/2009/05/14/news_update/481.txt
Trevor Wiberg was also highlighted during
May. You can read that article here: http://
www.capegazette.com/storiescurrent/200905/
wiberg26.html
Beth Sauer sent a letter to the editor, which was
also printed. To view this letter, click here: http://
www.pantagraph.com/articles/2009/05/05/
opinion/letters/136730.txt
You too can be seen in print. Contact the media
and let them know about EDS.
Ah, We ‘See’ Now
O
n visiting a local LensCrafters, information
regarding EDS was shared in passing and
along came the realization between customer
and store manager that the optometrists in each
store need to know more about it. The EDNF
member ordered ophthalmology MRGs and the
manager took it upon himself to deliver them
to the 20+ locations in the metropolitan area.
Challenge yourself to find new ways to get the
knowledge about EDS to the proper medical
professionals.
Vascular Information
Shared Widely
A
member purchased 175 of the new
VEDS MRG and Clinical Reference Guides,
and had them delivered to each Emergency
Room in his state. By providing these materials
to the directors of the emergency rooms, the
medical staff will have immediate access to
assess and treat those coming in with vascular
issues caused by EDS. He chose to do this
because a year ago, his daughter had such an
event and they had to go to three emergency
rooms before finding someone who knew how
to address the problem. Now, this life saving
information will be there when patients arrive at
emergency rooms with vascular complications.
This action offers more than basic awareness;
it advocates for the best of care and provides
medical professionals with the knowledge of
where additional information can be found. It
has the power to save lives.
SUMMER 2009
PAGE 27
L O O S E CONNECTIONS
The Magazine About Living With EDS
PUBLISHED QUARTERLY BY
GUIDELINES FOR SUBMISSIONS
TO LOOSE CONNECTIONS
1. For text documents, use Helvetica or Times of at least 10
points (preferably 12 to 16) in size, so our editors can easily
read your document and prepare it for publication. Attach
FOUNDER
Nancy Hanna Rogowski
1957–1995
President & CEO
Cindy Lauren
Board of Directors
Michele Darwin, Chair
Richard Goldenhersh
Jeanne Kingsbury
Cindy Lauren
Charlotte Mecum
Professional Advisory Network
Patrick Agnew, DPM
Peter Byers, MD
Edith Cheng, MD
Joseph Coselli, MD, FACC
Joseph Ernest III, MD
Clair Francomano, MD
Tamison Jewett, MD
Mark Lavallee, MDx
Howard Levy, MD, PhD
Nazli McDonnell, MD, PhD
Dianna Milewicz, MD, PhD
Anna Mitchell, MD, PhD
Raman Mitra, MD, PhD
Linda Neumann-Potash, RN, MN
Terry Olson, PT
Mary F. Otterson, MD, MS
Melanie Pepin, MS, CSG
Elizabeth Russell, MD
Ulrike Schwarze, MD
Karen Sparrow, PhD
Brad Tinkle, MD, PhD
Mike Yergler, MD
Communications Director/Editor
Barbara Goldenhersh, PhD
Design Director/Graphics & Type
Mark C. Martino
the text document in either Word (.doc) or Rich Text
Format (.rtf) to an e-mail sent to [email protected] that also
tells us how to reach you for more information.
2. For photographs, attach them to an e-mail to editor@ednf.
org; send three to five images that are at least 2400 x 3000
pixels (300 dpi resolution & 8 x 10 inches) and without
compression beyond that performed by the camera when
it was taken. In the e-mail, please identify the event or
cause for the photographs, including any relevant identification (persons involved, date, photographer’s name if
needed) and how to reach you for more information.
3. Following are the deadlines for the next year of four issues;
special arrangements can be made with the editors before
these dates, but not afterwards.
PUBLISHED ON
FEATURES DUE
COLUMNS DUE
FALL ’09
SEP 11
JULY 17
AUG 14
WINTER ’09
DEC 11
NOV 2
NOV 16
SPRING ‘10
MAR 12
JAN 25
FEB 15
SUMMER ’10
JUNE 22
MAY 11
MAY 25
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. Ehlers-Danlos National Foundation reserves all
and final editorial privileges, including the right to choose not
to print a submitted story; submissions may be edited at the
discretion of the editorial staff.
The opinions expressed in Loose Connections are those of the
contributors, authors, or advertisers, and do not necessarily
reflect the views of Ehlers-Danlos National Foundation, Inc., the
editorial staff, Professional Advisory Network, or the Board of
Directors. EDNF does not endorse any products.
To contact EDNF, email [email protected]; write to Ehlers-Danlos
National Foundation, 3200 Wilshire Boulevard, Suite 1601,
South Tower, Los Angeles, California 90010; or call us at (213)
368-3800, or fax to (213) 427-0057.
SUMMER 2009
PAGE 28
BIOGRAPHIES
Barbara Goldenhersh received her
undergraduate degree from Washington University, St. Louis, Missouri, her Masters degree
from Southern Illinois University at Edwardsville, and Doctorate from Southern Illinois
University at Carbondale. Author of three
books, her career as an college professor ended
as EDS complications mounted and, once she
was finally diagnosed at age 59, she realized she
could use her skills as a volunteer for EDNF, the
place where she found the help she needed to
understand the incomprehensible. She always
believed her task in life was to make a difference and now she makes that difference in a
new way.
Sue Jenkins is a graduate of Shepherd College, Shepherdstown, West Virginia, an RN
with Critical Care and Pain Management Certification. She worked as a primary critical care
nurse at NIH in Cardiac Surgery/Neurosurgery
ICU, assisting in research in both fields, Manager of Cardiac Telemetry Unit, Humana Hospital
in Sebastian, Florida and Critical Care Nursing
Instructor and Part-time Nursing Supervisor at
Centra Health, Lynchburg, Virginia. She was
the Assistant Director of Nursing for Archbold
Medical Center in Thomasville, Georgia. Sue is
currently Triage Manager of EDNF.
Barbara Pilvin is a librarian at the Free
Library of Philadelphia, where she spends most
of her time helping people with genealogical
and historical research. She is active in
consumer-health
advocacy
organizations
and is working towards a Consumer Health
Information Specialist certificate through the
Medical Library Association. Other passions are
French, music (especially singing), traveling,
walking, ice-skating and cooking.
Ann Rodiger is the Founder and Director
of the Balance Arts Center in New York City,
which focuses on the teaching, and application
of the Alexander Technique. She has a MA in
Dance from The Ohio State University where
she focused on Movement Notation and
Movement Analysis. She taught dance at the
University of Illinois - Champaign, California
State University - Hayward and the University
of Hawaii - Manoa. She also travels to Berlin,
Germany several times a year to teach. She has
been teaching the Alexander Technique since
1981.
SarA Strecker. I am a 24 year old
graduate student with Ehlers-Danlos syndrome
hypermobility type, studying bone and collagen
biology for my thesis. I am also a Zebra.
SUMMER 2009
PAGE 29
THIS EDITION OF LOOSE CONNECTIONS IS COPYRIGHT 2009 BY EHLERSDANLOS NATIONAL FOUNDATION. PHOTOGRAPHY: COVER Winding
Forest Path © 2007 AVTG; PAGE DETAILS Daisies in Field by retrodevil; PAGE
FIVE © 2008 James K. Crawford; BELOW © 2005 Mayang Adnin.