L OOS E CONNECTIONS

Te Magazine About Living With EDS Autumn 2012

EDNF Center for Clinical Care & Research Clinic Endowment Fund .................................................. 2
Conference Photographs ...................................................................................................................... 4
Being Seths Mom Len Cook .............................................................................................................. 7
Going for the Gold Sara E. Strecker .................................................................................................. 10
Facing Cancer with Ehlers-Danlos Syndrome Sue Jenkins, RN .......................................................... 11
From the Editors Desk: Care & Feeding of Internet Administrators Mark C. Martino ........................ 13
A Back Pain Sufferers Guide to Bedding ............................................................................................ 14
New Work on Classic EDS May Bring Molecular Diagnosis Rate to 90% Amy Bianco ....................... 15
Got Drugs? National Take-Back Initiative ......................................................................................... 17
COX-2 Inhibitor NSAIDs & Cardiovascular Risk Explained .............................................................. 18
How to Talk to a Doctor Natasha Tracy ........................................................................................... 20
Physician Defnitively Links Irritable Bowel Syndrome & Bacteria in Gut ........................................... 22
Publisher's Index ............................................................................................................................ 23
AUTUMN 2012
PAGE 2
EDNF CENTER FOR
CLINICAL CARE & RESEARCH
Perhaps the biggest announcement at this summers Learning Conference was the plan for the Clinic
Endowment Fund, to raise money for the frst EDNF Center for Clinical Care and Research. The project is
still forming, including where it might be located.
improving patient treatment
through superior physician training
and scientific advancement
Clinic Endowment Fund
Ehlers-Danlos National Foundation: Who we are.
Nancy Hanna Rogowski (19571995) founded Ehlers-Danlos National Foundation
(EDNF) in 1985. We are the world leader in knowledge about the group of genetic
connective tissue disorders known as Ehlers-Danlos syndrome (EDS). EDNF is a 501
(c) (3) nonprot organization; our members and volunteers are dedicated to creating
tools, resources and guidance for those born with EDS by:
Generating and distributing accurate and responsible information;
Providing a network of support and communication; and
Fostering and funding research.
Support for Living With EDS: Its what we do, every day.
For more than 25 years, we have been the authority for EDS: delivering
recommendations for those seeking diagnosis of problems that have been a life-long
mystery; offering advice and emotional validation for the newly diagnosed wrestling
with what a genetic disorder means for them and their families; and providing tips
for those living with EDS for years, including day-to-day inspiration and news. In
recent years, EDNF has been building new community connections every day.
Our Facebook page has grown from just over 1,000 to a bustling electronic
village of nearly 8,000 people affected by EDS, with a potential reach through
AUTUMN 2012
PAGE 3
our fans to more than 2.2 million people. Join our Facebook page.
Our EDNF Inspire Online Community has become one of the most active
support sites on the Inspire network. Visit Inspire here.
Our Learning Conference is now a truly annual event, and has broken previous
records each of the past three years, rising to nearly 600 attendees in 2012.
Our website impressions are skyrocketing, rising from a worldwide ranking
around one million in 2010 to 679,644 in September 2012. Our bandwidth
limit has been increased three of the past six months. Explore our website.
We are dedicated to quality patient support, and our numbers show this clearly. But
support alone is not enough to achieve our mission.
We need your help.
We seek to improve the experience of
EDS in our lifetimes.
Our Goal: Realizing the dream of physician training,
clinical advancement, and research.
EDNF seeks your support in endowing a facility that will be the world center for EDS,
from physician training and clinical practices to scientic research. The opportunities
are boundless; you can help the lives of children and families by advancing the
progress towards solving a genetic disorder that affects the fundamental tissue of
the body.
There are a series of partnership and support levels that will ensure your participation
is recognized. You have the chance to join us in this life-changing endeavor and
improve our future, from site selection through scientic breakthroughs and beyond.
This is just the beginning. Our dream doesnt end with one center: we envision a
global network of centers working towards a cure.
You can make our dream come true.
Watch the Clinic web page at EDNF http://bit.ly/Tay76C
for more information as it develops.
AUTUMN 2012
PAGE 4
My daughter Taylor (middle left) was diagnosed in
August 2011 and her best friend Marissa (far left)was
diagnosed in April 2012. They have been friends since
6th grade and have cheered together on the school and
competition squads. As long as I can remember, one
or both were injured in some way, and fractures came
easily due to the strenuous activity in cheerleading. It
seemed logical to do step away from cheerleading and
focus on rehab and core strengthening. Part of rehab
was a two-week intensive PT program at Cincinnati
Children's Hospital run by Stephanie Powell. During
the program they met Anna (far right) and developed
another wonderful friendship. A picture speaks a
thousand words; as you can see this picture shows
three very happy, determined girls with their favorite
physician, Dr. Brad Tinkle.
2012 Learning Conference Living with EDS
Northern Kentucky Convention Center
Cincinnati, Ohio August 9-11
Stephanie Spitz from South Carolina (left) and
Mary-Kate Wells from Massachusetts (right).
AUTUMN 2012
PAGE 5
At banquet
(left to right):
Sandra Barr (TX)
Lauri McVicker (KY)
Rhonda Edwards
(spouse of EDSer)
Charlotte (standing)
Eve Adamson
Ann
(Charlotte's daughter)
Meryl Brutman
This picture is of my son
Nico, age 12, in the Northern
Kentucky Convention Center.
We were both diagnosed
with classic EDS in June
of 2011 and this was
our rst conference.
We found the conference
fun and informative and
look forward to next year.
Amy Monte, Ohio
AUTUMN 2012
PAGE 6
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AUTUMN 2012
PAGE 7
L
ET me start by saying that Im not a doctor,
nurse, teacher or even a writer. Im not an
expert on EDS. Im just the mom of a little boy
who has EDS.
My ten-year-old son, Seth, was diagnosed with
EDS when he was ve. Being my fourth child, I
always knew he was different. He missed all the
usual growth milestones by a lot. He sat at eight
months, never crawled, stood while holding on
to things at ten months, he didnt walk until he
was 22 months old. He had velvety skin, was
double jointed in everywhere, but we had been
told that it was no big deal: it was just a uke.
Nothing prepares you for the cold dread that
enters your soul when a doctor looks at you
and says, I really think that you should see a
geneticist. When those words are spoken all
sounds, smells, everything around you fades
away except the beautiful smiling face of your
child. I wondered, How can this be? What did
I do wrong? Is it fatal? Can it be cured? All of
these thoughts shoot through your head in an
instant like the end of a reworks display, one
on top of another.
Ive learned a lot since that day in the cold
sterile doctors ofce. Ive learned that EDS is
not fatal, but that its progressive; that there
will never be a cure; and that it will be a life
long journey for him. Not much is known
about EDS; even many doctors have little, if
any, knowledge; and any EDS knowledge they
have may not be on the type of EDS Seth has.
It was obvious that to help Seth, I had to learn
on my own, and quickly. I discovered Seths
body will forever be prone to dislocations of
any and every joint, and not just dislocations
from injuries but spontaneous dislocations
that strike at any moment with no rhyme or

BEING SETHS MOM
reason. At times he suffers from three or more
dislocations a day. Its not a question of, Is he
in pain today? but rather, How much pain is
in at this moment?
My son at a young age taught me that being
different hurts. People dont understand
it. Many dont try. EDS is not an obvious
syndrome. When children have muscular
dystrophy or cystic brosis, its easy to see that
the child has an ailment. This is not the case
with EDS. He looks normal, until he falls, gets
up too fast, or for no reason at all his little body
just falls apart.
Many of the things Ive learned were out of
necessity and on the y. First and foremost, I
believe that you have to do your own research.
With so little known about EDS, you cant expect
the medical staff you meet will know what you
know. I research prior to meeting a new doctor,
and I take my printed research with me; if Im
going to the dentist or to a pain management
specialist, Ill bring the appropriate information
with me. If the doctor starts down a path that
contradicts what Ive learned or understand, I
make sure to start asking questions. By bringing
it up politely and with a non-confrontational
attitude, its generally received well, and I leave
the appointment either with answers or with a
path to help me nd answers.
If you encounter a doctor who simply wont
acknowledge your concerns or who suggests
things that strike you as being wrong, trust
your mothers instinct and walk away. You
dont have to use a provider that you dont
trust. One doctor suggested that I drop my
child off for a few days at his hospital, and the
doctor would then break my child and put
him back together over and over to see how
AUTUMN 2012
PAGE 8
his body responds. Can you imagine anyone
agreeing to this? I was shocked to learn later
that he was head of the orthopedic unit of
his high-prole hospital. I couldnt get out of
there fast enough, and I never went back. It
is, however, a wonderful facility and I would
highly recommend it to anyone, as long as you
dont see the head of orthopedics.
Second, I think you have an obligation to
teach those in your childs life as much as they
are willing to learn, especially teachers, school
nurses, day-care workers, parents of their best
friends, and anyone who may be the authority
in charge of your child in your absence. EDNF
has some wonderful tools to help you with
this. I print An Educators Guide each year
(available free of charge
here, from the EDNF
web site) and meet
with my sons teacher,
principal, and school
nurses every year prior
to school starting. The
brochure allows me to
explain EDS and the
type of things that
may need adjusted from the norm, such as a
bookbag on wheels or an extra set of books for
the house that will help protect his shoulders
from carrying a heavy bookbag. The brochure
lists many things, many of which you may
not need, but showing educators the list of
possibilities and then highlighting the ones
that you actually need creates understanding
from the beginning. It is much easier to have
a plan in place that you may not need than to
try to put one in place in the middle of a crisis.
Third, if your child is young, keep a notebook
handy. Document each and every injury,
whether you are with your child at the time of
the injury or not. Mark the date, how the injury
occurred, who was around when the injury
took place, and what treatment was undertaken
either at a doctor, urgent care ofce or at home.
Its unbelievable that not only do you have to
deal with a child with EDS, but you have to
prepare to deal with Child Protective Services.
I hope this book will never be used, but should
someone be concerned that your child is being
hurt, it may save you the devastation of losing
your child even for a short time. Some have
had to ght this ght and have lost. Dont join
that group: document, document, document.
Fourth, you cant judge someone elses pain.
When Seth tells me hes in pain, or feels weak,
I believe him. Every time, without a doubt. He
has no motive to lie. He needs to know that Im
in his corner and that Ill help him any time.
Too often when you go to a doctor or he goes
to the school nurse we hear, He looks ne.
People want there to
be a cause for pain.
They want to see a
bruise, or know there
was a fall. Its hard for
them to understand
chronic pain with
no cause, or the that
sometimes he can be
walking just ne and
suddenly his legs or arms just quit. So when he
looks at me and says Mom, I comfort him,
and we discuss what hed like to do: rest, wrap
something, ice or take some pain meds. I never
ever say, Youre ne, Shake it off, or Big
boys dont cry. You cant judge anothers pain,
its impossible.
Fifth, nd something your child is passionate
about, and support it. For Seth, its swimming.
We started swimming lessons because its a
low-impact exercise. He loves it and has been
on the swim team for the last year. He has a
wicked breaststroke due to his hypermobility
and has won many races. Swimming gives
him the team experience he misses out on
by not being able to play contact sports. Of
course there are times he cant swim due to an
injury and sometimes he even gets hurt during
You cant judge someone
elses pain. When
Seth tells me hes in
pain, I believe him.
AUTUMN 2012
PAGE 9
practice or a meet, but these are chances were
willing to take to give him a sense of realness.
Sixth, Ive learned to be prepared. Ive stocked
my house, the day-care, the school and my car
with a rst-aid kit. I keep cold packs, wraps,
slings, pain medicine, bandages, and extra
clothes in each bag. In my own bag I also keep
a pair of my tennis shoes, in case he needs me
to carry him and I have on heels. You never
know when something will happen and there
is no need for him to hurt any longer than he
has to. The quicker you can treat an injury, the
quicker healing can begin.
Ive learned that people react to my son
differently if he has a brace, a wrap or is in
a wheelchair than at other times. Ive also
realized Im probably guilty myself. So I now
make it a point to look a child with a disability
in the eye and smile. Then I look at the parent
and do the same.
Seth tells me often that he just wants to be a
real boy. This is the hardest thing for me; it
breaks my heart. There are many things that he
wants to try that I simply cant allow. However,
there are more things that he wants to do that
I fear, but take a deep breath and allow, like
bounce houses: the chance of injury is so high,
but he loves them and knows the risks. As
much as I would like to say no, I silence my
inner mom and let him take the risks he can.
After all, its his risk. I cant protect him from
everything, he can get hurt at just standing,
and putting him in a bubble is not an option.
Better to have a child whos willing to take his
chances than one whos so afraid of everything
that he misses out on life altogether.
My challenge now is to letting him go, and
letting him own his EDS. It kills me because as
a mom, I want to x it or control it, and I cant.
He has to learn his limits, as well as how he
wants to handle his injuries. Most of the time,
he decides when he wants to ice an injury, if he
wants meds, and so on. Hes only ten, so there
are times that I or a doctor have to take control
but when he can we allow him that right.
As I said before, Ive had no training or medical
education. Im just a mom doing the best I can
to care for my son with an invisible syndrome,
while letting him live his life to the best of his
ability. With the grace of God, well make it
through.
Len Cook
I like living.
I have sometimes been wildly, despairingly,
acutely miserable, racked with sorrow, but
through it all, I still know quite certainly
that just to be alive is a grand thing.
Agatha Christie
|
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PAGE 10
The best athletes in the world are, essentially,
mutants. Somewhere along the line their
genetics jumbled in such a way that gave them
an advantage over the everyman. Even the
healthiest of people has something unique
about their genetic makeup. Most people
consider a mutation to be bad, but thats not
always the case. The bad ones get all the press.
But what about the mutation that makes
someone a little more efcient when it comes
to digesting protein or prevents them from
getting a specic disease? Those mutations will
get passed down silently, making the human
race better.
Ehlers-Danlos doesnt make me faster or
stronger physically, but if sleeping was an
Olympic sport, I might take the gold. It doesnt
grant me any advantage in sports that I can
think, except maybe in gymnastics, but Im
sure after the rst fall, Id be down for the
count. And I wont be winning any races any
time soon, though my heart denitely likes to
race without me.
Yet my mutation makes me stronger maybe
not physically, but emotionally. How many
normal people can withstand the pain we do?
How many can, on a daily basis, make lemons
out of lemonade: colorful socks becoming
brace covers, canes decorated with stickers,
smiles even through the pain. We are Olympic
medalists because of what weve overcome;
now we just have to nd the sport that denes
us. Up for armchair football, anyone?
Sara E. Streker

GOING FOR THE GOLD
A
FRIEND of mine suggested, as we were
watching the Olympics, that there should
be one normal person in each race. Someone
physically t and healthy, who would run the
races alongside these elite athletes, just so we
could get a feel for the true awesomeness of
their feats. We laughed at the commentators
who complained that the pace of the athletes
was so slow, when they were, in reality, running
at least twice as fast as anyone we personally
knew. But it does make you wonder about
expectations. What about that person who
trained his or her whole life for the Olympics
and got fourth place? Does that make them
any less of an athlete than the person who got
gold, especially when the times or scores were
thousandths of a point different?
I was particularly enamored by Oscar Pistorius.
Hes the double amputee who is also a
sprinter disabled by societys standards, but
somehow in the most prestigious arena for
those whose success is dened by physical
tness. It makes one think, if he can do it, why
not me?
The human body is remarkably pliant. But not
just anyone can just train hard enough to be
an Olympic athlete. There has to be something
extraordinary about their mind and their body.
Lance Armstrong, the cyclist, had abnormally
long femurs (thigh bones) that make him, quite
literally, built for cycling. Michael Phelps has
a larger than average arm-span, giving him an
advantage in swimming. Most gymnasts and
divers are quite short and light, making the
powerful ips substantially easier. The average
height of a basketball player is 6'7". Id like to
see that basketball player attempt a ip on the
uneven bars hed likely brush the ground!
AUTUMN 2012
PAGE 11
he placed a portacath under my left clavicle.
Dont you love when EDS rears its head?
After warning about not hyperextending my
neck, about dislocations and subluxations, and
discussing my difculties with anesthesia, I felt
comfortable going ahead. Not only did I wake
up during the bronchoscopy after a megadose
of Versed during the bronchoscopy, but I also
woke up during the port placement in the OR
after propofol. I guess all the years of pain meds
have given me quite a tolerance. Poor surgeon,
he laughed when I asked if he wasnt nished
yet. Then the fun began hed reviewed the
EDNF website and had learned about CEDS, so
he had added extra stitches and steristrips. But
when I went after ten days for him to check my
incision, it hadnt healed much, so he said to
come back in two weeks. There we were.
The following week was so full of stress, worry
and tears. I had to wait over two hours for lab
work to be drawn the day before chemotherapy
began. Hours and hours were spent researching
the chemo drugs that this wonderfully kind,
gentle giant of an oncologist had told me I
was to have. My pain levels went through the
roof with lack of sleep, nonstop back pain and
sciatica, and meds did little to help.
Finally the day arrived, and chemo began.
Years of being an RN had never prepared me for
this. I was terried of the poison dripping into
my body, what could happen, the prognosis
of a few months to perhaps a few years, and
suddenly it was time. Thankfully the portacath
worked without a hitch, and outside of a small
panic attack the infusion went ne.
Stitches on the insertion site had to remain in
place for ve weeks before I healed; thankfully
FACING CANCER WITH
EHLERS-DANLOS SYNDROME
A
MONTH ago in April, I was just me,
battling the chronic pain and other
symptoms of Classical EDS. I went to bed and
awakened to nd the right side of my neck
was swollen terribly and exquisitely painful. I
couldnt turn my head to see in the car mirrors,
so I waited two days until my husband had a
doctors appointment and rose with him.
My physicians face drained of color as he
examined me. That day I had a CT of my
neck and upper chest, then a needle biopsy of
several of the neck lymph glands. I was moving
between numb, sobbing and terried! They told
me immediately there were malignant cells, but
the insurance company wouldnt pay for other
scans until I had a pathology report in hand.
During the two preceding months, Id had
terrible bronchitis, treated with three antibiotics
and steroids. The bronchitis never completely
left, though the infection did. During that time,
my low back and sacrum hurt like never before,
with sciatica down my right leg sometimes
knee-length and other times down the outside
of the leg to my foot. Even with my heavy
medications, it stayed at 8 to 10 pain on the
110 pain scale.
The next two weeks were a whirlwind of CT
scans, PET scan, MRIs, and a bone scan after
a bronchoscopy. Every day was something;
I needed rest so badly but there was not any
time. Then came the formal diagnosis of stage
four lung cancer with metastases. I couldnt
breathe; my husband and I held each other
and cried. We couldnt slow down and work
through our feelings, we had to keep moving
because time was of the essence.
An appointment was made with a surgeon I
had known from working as a CVICU RN, so
AUTUMN 2012
PAGE 12
my surgeon had read up on EDS and recognized
the poor healing that I was experiencing yet
again as a Classical EDS person. Remarkably, I
had no pain with removal.
Throughout this rst cycle of chemo, I wondered
if many symptoms were part of my EDS. The
worst was abdominal spasms, feeling as if large
shards of broken glass were tumbling through
my intestines, a horrible pain. Muscle pain and
spasm from the EDS or side effect of chemo?
Recurrent headaches of migraine quality
beginning at the rear skull base and actually
caused acute pain when touching my skull
in certain placeswere they chemo affecting
neuropathways or EDS-impacted tissues trying
to heal? Amazingly, the sciatica and sacral pain
disappeared for a long time, recurring only at
a fraction of the previous levels; who knows
why, but a welcomed result!
GI symptoms continued throughout the
three-week chemo cycle: inactive nausea, no
appetite, reux in spite of meds that have
worked for a very long time, severe constipation
unresponsive to most therapies, all hard to live
with, but typical of many with EDS. Eating
with nausea is so very odd: sweets taste awful,
lemon or salty seem to work for me. Some days
eating and drinking are just so hard, other days
life is almost normal.
The days where life is almost normal, we
rejoice! I head outside to enjoy the wonders
of nature with my dog at my side. When my
husband is off from work, we head to our patch
of woods (acres and acres of trees, dogwoods
and redbuds, that I call Serenity) to sit quietly
where there are no people sounds, no cars, only
birds and the breeze. An occasional message
from a nearby donkey makes us laugh, wild
turkeys respond to my hubbys call only to nd
humans instead of the other turkeys. Sitting
in the spring sun in camp chairs, sometimes
wrapped in lightweight blankets, and quietly
talking so intimately about the present and the
future without fearing interruption by others
brings back the joy of life and love; it reminds
me that the future is what I make of it no matter
how long it lasts.
Suddenly, at a time where I was told that I would
feel good, nausea again rears its ugly head; the
meds are not working. Back to childhood days
of at Coke and saltines, the pounds begin to
fall off again because healthy foods just wont
go down. Finally I phone my oncologists ofce
for help; we talk about synthetic marijuana,
something called Marinol. I want to research
it, to think about it, and we decide to wait until
my second chemo treatment later this week.
Research shows lots of interactions with other
meds I am on with my EDS; it seems it would
require much adjusting and frankly, am I up to
doing that?
Pain has returned with a vengeance after a two-
week absence; how I had hoped it was to be
gone while I was on this journey! Guess one
should be thankful for it being so lessened for
two of three weeks.
So the journey continues, with prayers so
many times a day. My faith is strong, and my
God is with me; I can feel the presence when I
pray for help or to be with me. I feel so sad for
others who do not have this daily walk with
their God, and cannot imagine their journey
with cancer.
Sue Jenkins, RN
EDNF Triage Manager
This article is unfnished: Sue passed away on
August 29, as I was editing. I miss her every
day, and found myself avoiding completion
of this issue. I hope she would forgive me. An
appropriate tribute to her life and dedication to
our community will come next issue. Ed.
AUTUMN 2012
PAGE 13
A
FTER spending a couple of years working
with the EDNF Facebook page, and more
years before that than I care to count dealing
with bulletin boards and various Internet
forums, I have some guidelines for your to
consider. Theyre just suggestions: I and other
web administrators will probably still answer
any questions that irritate us, but were likely to
be more gracious and helpful when we answer.
1 Dont ask too many questions at once. On
many sites theres a character limit to posts, rst
of all. Second, its hard for the administrator
(admin) to keep track of which question to
answer, and it can be physically challenging
some days to keep scrolling up and down. Third,
as well as overwhelming the person trying to
answer you, youre likely to be overwhelmed
by the amount of information you get back. Its
probably going to be easier for everyone if you
split your questions into a couple of sequential
posts, and let a little time pass between them,
so you can absorb the answers and perhaps
write more focused follow-up questions.
2 I know how exciting it can be to nally feel
part of something, to feel youre not crazy
anymore and to drink up a new forum in large
gulps, but admins can deal with more than a
hundred posts in a usual day and its a little
daunting as an admin to discover an added
twenty or thirty notices from one person
all at once. Take your time. Forums dont go
anywhere or have anything else to do with
their existence generally. Admins do.
3 Dont ask a really general, comprehensive
question. For instance, How do you deal with
EDS? is far too big a question, and, How do
you deal with Hypermobility EDS? isnt much
better. How do you deal with a hypermobile
FROM THE EDITORS DESK: THE CARE & FEEDING
OF INTERNET ADMINISTRATORS
shoulder? is much more likely to get an answer
thats manageable for both the questioner and
the person answering.
4 Do a little bit of research; at least take a look
at the days posts. Theres nothing quite so
annoying to an admin as answering the same
question three or four times in a row. Day after
day is one thing, admins are resigned to the
fact that no one else goes back in history; when
we get the same question several times on the
same daywe try not to be rude, but dont be
surprised if you get a curt, See previous posts.
4a Corollary: think about reading the
previous posts in a thread before making your
comment. Its quite possible that someones
already corrected what youre about to correct,
or gone on, possibly at great length, about an
issue youre bringing up. This usually happens
when youre responding to someones post
in the newsfeed, or a friend of yours makes a
comment that you see in a noticationplease
consider clicking See comment or taking the
extra minute to go to the original thread? The
admin might be saved from having to repost
the answer already in the thread, everyone in
the thread might be saved from reading your
comment and questioning their memory
didnt we already discuss this? Look, yes, we
did. OK, Im not losing my mind.
5 Understand that social media dont have
much of a memory, and the admin may well
post information that you dont need to hear,
but that might need to be seen by someone
whos never seen the answer before. Be patient
with getting material youve seen before.
Theres probably a reason the admin posted it
yet again, or possible s/he just made a mistake,
but be patient.
AUTUMN 2012
PAGE 14
6 Dont say anything to anyoneparticularly
the people trying to help youthat you
wouldnt say to their face if they were standing
right in front of you. Its likely almost no
one helping you is getting paid to put up
with rudeness or personal attacks, although
truthfully, no one should have to endure
personal attacks, paid or not. Remember you
may well be talking to a volunteer with the
very illness and problems youre having, or
enduring even worse symptoms.
6a To put it slightly differently, dont say
anything under you onscreen name that you
wouldnt say if you were using your own name.
6b Troll , verb [trans.], informal computing:
send (an e-mail message or posting on the
Internet) intended to provoke a response from
the reader by containing errors.
troll, noun, informal computing: an e-mail
message or posting on the Internet intended to
provoke an indignant response in the reader.
Dont. Please. Justdont.
Mark C. Martino
Editor-in-Chief
I
F you have chronic back pain, you might
nd that your back pain is interfering with a
good nights sleep. One of the most important
measures you can take on your own is to be
sure that your mattress and pillow arent
contributing to your nighttime woes.
What should you look for? There really is no
best mattress for a person with chronic back
pain. The real issue is which mattress is the
best one for you. In general, many people with
chronic back pain nd that waterbeds, airbeds
and foam mattresses are uncomfortable and
increase back pain because they dont provide
needed support. Firmer mattresses are typically
reported to be more comfortable for someone
with back pain.
If rm is good, is the most rm best? Not
necessarily. According to a joint clinical
guideline from the American College of
Physicians and the American Pain Society, a rm
mattress is less likely than one thats medium-
rm to lead to improvement in patients with
chronic low back pain.
JOHNS HOPKINS: A Back Pain Sufferers Guide to Bedding
Out with the old: If you always sleep in the
same spot, as most people do, uncomfortable
indentations may form on the mattress over
time. You can keep indentations to a minimum
by rotating the mattress and turning it upside
down regularly throughout the year. If a
formerly comfortable mattress is now leaving
you in pain in the morning, it may be time to
get a new one, especially if youve been careful
about rotating and turning it.
Not ready to invest in a new mattress? These
short-term measures might help: For additional
rmness, try putting a piece of plywood between
the mattress and box spring. Or, if you want less
rmness, add padding on top of the mattress.
Because your neck and back move as one unit,
they need to be supported as one unit. A good
pillow will do this by keeping your neck aligned
with your chest and the lower portions of your
spine. In other words, dont choose a pillow (or
use multiple pillows) that will position your
neck at an angle higher than your back. And,
conversely, dont select one thats so at that
your head is lower than your neck and the rest
of your spine.
AUTUMN 2012
PAGE 15
One of the objectives of the study was to
look for genotypephenotype correlations,
a Holy Grail in clinical genetic studies. By
documenting the exact mutation in each
patient (where possible) and comparing it to
that patients clinical prole, the group hoped
to link specic molecular defects to certain
symptoms. Toward this end they made two
important observations.
First, they found that, unlike the situation
with some other heritable disorders of
connective tissue, with cEDS it seems to make
no signicant clinical difference whether the
causative mutation is structural or null. In
osteogenesis imperfecta, which is caused by a
defect in the collagen I gene, and in vascular
type Ehlers-Danlos syndrome, where collagen
III is involved, it has been shown that a null
mutation produces a less severe phenotype
than a structural mutation
2
. This is because
with a null mutation, the remaining allele
continues to function with the result that
normal collagen is produced but in a reduced
amount. A structural mutation, on the other
hand, can disrupt the production or function
of collagen in many ways.
Dr. De Paepes group was able to elucidate
various complex mechanisms by which
myriad structural COL5 mutations arrive at a
common pathogenic pathway: in the end, they
all have the effect of reducing the amount of
normal type V collagen available in the extra
cellular matrix. Thus the group asserts that
all of the known COL5A1/COL5A2 defects
can be considered functionally null. They
reason that this may be because collagen V co-
NEW WORK ON CLASSIC EDS MAY BRING
MOLECULAR DIAGNOSIS RATE TO 90%
A group of researchers in Belgium led by Dr.
Anne De Paepe has been working to uncover
more defects to type V collagen that would
be diagnostic for Ehlers-Danlos syndrome,
classic type. Genetic testing currently uncovers
mutations in about half of patients meeting
clinical criteria for cEDS. While any signicant
expansion of the database of known collagen
V mutations would improve a cEDS patients
chances of receiving molecular conrmation
of his or her diagnosis, Dr. De Paepes group
goes so far in a forthcoming paper
1
as to assert
that the COL5A1 and COL5A2 genes are likely
to be the sole culprits behind the disorder, and
that with rened diagnostic criteria clinicians
should be able to conrm the diagnosis 90% of
the time.
Dr. De Paepes group employed exhaustive
biochemical and molecular analytical
techniques to look for causal involvement of
collagen V in a cohort of 126 patients with
diagnosed or suspected cEDS. They found that
48 patients had null COL5A1 mutations,
where one allele of the gene (we have two,
one from each parent) had been rendered
non-functional, while structural mutations
throughout the COL5A1 gene were identied in
23 patients. A mutation is considered structural
when it alters a gene product (protein) in
a manner that changes its functioning. In
addition, in two patients the outcome of
the COL5A1 mutation was undetermined.
Mutations in the COL5A2 gene were found in
13 patients; all of them were structural. In all,
the group added 49 COL5 mutations to the 72
in the database of known cEDS variations. No
other genes were implicated.
1
Symoens S, et al: Comprehensive molecular analysis
demonstrates type V collagen mutations in over 90% of
patients with classic EDS and allows to rene diagnostic
criteria, Human Mutation, June 13 [epub ahead of print].
2
Leistritz et al: COL3A1 haploinsufciency results in a
variety of Ehlers-Danlos syndrome type IV with delayed
onset of complications and longer life expectancy, Ge-
netics in Medicine 13(8):717-722, 2011.
AUTUMN 2012
PAGE 16
assembles with collagen I to create brils, and
that in this union the less abundant collagen V
plays a regulatory rather than a structural role.
Any defect in collagen V would perturb this
regulatory function and result in a disorganized
extra cellular matrix. The authors note that
there is a subset of structural COL5 mutations
that appear to disrupt the normal interaction
of type V collagen with other constituents in
the extracellular matrix.
3
Work is continuing to
see what effects these defects might have on
phenotypes.
Thus, except for the fact that all of the patients
with COL5A2 mutations were located on the
more severe end of the cEDS spectrum than
those with COL5A1 mutations, Dr. De Paepes
group found no
signicant correlation
between the type
of COL5 mutation
and the patients
phenotype. It made
no difference whether
the mutation was
structural or null or
if it were structural,
what kind of alteration
to the gene it was.
For diagnostic purposes, then, it would appear
that testing for loss of expression of one COL5A1
allele is fundamental. Dr. De Paepes group was
able to conrm such loss in seven patients
for whom the underlying mutation could not
be found. This brought to 93 the number of
patients for whom causal involvement of type
V collagen could be reported, leaving 33 of
the original cohort in whom no mutation was
found, or in whom a null-allele was excluded,
or the presence of a null COL5A1 allele could
be neither conrmed or excluded.
Perhaps the most striking nding of the
study and the other major observation Dr.
De Paepes group was able to make regarding
genotypephenotype correlation was that the
presence of all of the major diagnostic criteria
for cEDS is a reliable predictor that a type V
collagen mutation will be found. The patients
in the study were divided into two groups based
on their clinical proles. The rst group, of 102
patients, fullled all three of the major criteria
for classic EDS: skin hyperextensibility; skin
fragility resulting in widened, atrophic and
cigarette paper scars; and joint hypermobility.
Group 2 consisted of 24 patients who met only
two of the major criteria. All of the patients
in group 2 were among the 33 for whom
no causative defect in collagen V could be
reported. This gave the
authors condence to
assume that technical
limitations kept them
from nding mutations
in the remaining six
patients who met all
three major criteria for
cEDS. So, of the 102
patients who met all
major criteria for cEDS,
the authors found
evidence of a type V
collagen defect in 93, about 90%. The authors
thus propose that the Villefranche criteria for
cEDS be made more stringent to require that all
three major criteria be met.
It is interesting to note that in this study all
of the patients in group 2 were missing the
same major criterion: (clinically signicant)
dystrophic scarring. The authors point out
that biochemical collagen analysis may still
be necessary (or contributory) for differential
diagnosis with other EDS subtypes; specically,
they suggest ruling out kyphoscoliotic EDS
in patients with severe (kypho)scoliosis and
vascular EDS in patients (especially young
children with mild skin involvement) where
3
Symoens S et al: Identication of binding partners in-
teracting with the 1-N-propeptide of type V collagen,
Biochem J 433:371381, 2011.
Of the patients who
met all major criteria
for cEDS, the authors
found evidence of a
type V collagen defect
in about 90%.
AUTUMN 2012
PAGE 17
easy bruising or family history might suggest it.
But the biggest impact of this study is likely to
be on the differential diagnosis between cEDS
and Ehlers-Danlos syndrome, hypermobility
type. Here the more stringent cEDS diagnostic
criteria will be crucial, for there is no molecular
test for hEDS. At present the two can be
difcult to differentiate in patients with a mild
expression of the cEDS phenotype. Many hEDS
patients also have soft, velvety skin (though
the authors point out that it is not as doughy
as in cEDS patients); it is difcult to measure
skin hyperextensivity, which many hEDS
patients exhibit to some degree; and of course,
joint hypermobility is the most important
major criterion for hEDS. A further challenge is
presented by the surprising nding in this study
that in two thirds of the mutation-positive
patients the mutation was shown to occur de
novo; that is, it had not been passed down from
September 29, 2012
10:00 am 2:00 pm
T
HE Drug Enforcement Administration
(DEA) has scheduled another National
Prescription Drug Take-Back Day which will
take place on Saturday, September 29, 2012,
from 10:00 a.m. to 2:00 p.m. This is a great
opportunity for those who missed the previous
events, or who have subsequently accumulated
unwanted, unused prescription drugs, to safely
dispose of those medications.
The American people have responded
overwhelmingly to the most recent DEA-led
National Prescription Drug Take-Back Day. On
April 28th, citizens turned in a record-breaking
552,161 pounds of unwanted or expired
medications for safe and proper disposal.
DEA Administrator Michele M. Leonhart said,
While a uniform system for prescription drug
a parent. Thus family history would provide no
guidance in most cases. On the other hand,
with the accuracy of molecular testing for cEDS
at about 90%, clinicians will be much more
condent in ruling it out.
EDS experts met in Belgium this month to revise
the nosology for the various EDS subtypes. If
they do indeed adopt more stringent diagnostic
guidelines for cEDS, we can expect to see a
greater emphasis placed on skin fragility by
clinicians. Poor wound healing, spontaneous
splitting of the skin, and the tell-tale cigarette
paper scars over joints will become a sine qua
non of Ehlers-Danlos syndrome, classic type.
Amy Bianco
Editor, Medical Section
Got Drugs? National Take-Back Initiative
disposal is being nalized, we will continue to
sponsor these important take-back opportunities
as a service to our communities. Our take-
back events highlight the problems related to
prescription drug abuse and give our citizens
an opportunity to contribute to the solution.
These events are only made possible through
the dedicated work and commitment of our
state, federal, local, and tribal partners and DEA
thanks each and every one of them for their
efforts on behalf of the American people.
Another advantage of this program is it
discourages people from ushing drugs down
their toilets. Drugs improperly disposed of wind
up in rivers and lakes where they harm aquatic
life and contaminate water supply, according
to the Environmental Protection Agency.
General public inquiries can be made at 1-800-
882-9539. Click here to search for a collection
site near you.
AUTUMN 2012
PAGE 18
COX-2 INHIBITOR NSAIDS &
CARDIOVASCULAR RISK EXPLAINED
A
FTER nearly 13 years of study and intense
debate, a pair of new papers from the
Perelman School of Medicine, at the University
of Pennsylvania have conrmed exactly how a
once-popular class of anti-inammatory drugs
leads to cardiovascular risk for people taking it.
It has been almost eight years since Vioxx

was withdrawn by Merck from the market,
provoking an intense controversy about the
role inhibitors of the enzyme COX-2 play in
causing heart attacks and strokes. Since then,
other drugs in the class from Pzer, Novartis,
and Merck have been withdrawn (Bextra

);
have failed to be approved (Arcoxia

, Prexige

);
or have been retained on the market in the
US with a black box warning on the label
(Celebrex

).
COX-2 is one of two similar enzymes that churn
out short-lived fats called prostaglandins.
The other, COX-1, works in platelets cells
in the blood that stick together in the rst
stages of clotting. COX-2 is active in the cells
that line blood vessels. These enzymes have
diverse, potent, and often contrasting effects
in the body. For example, low-dose aspirin
protects against heart attacks and strokes by
blocking COX-1 from forming a prostaglandin
called thromboxane A2 in platelets. On the
other hand, COX-2 is the more important
source of prostaglandins, particularly one
called prostocyclin, which causes pain and
inammation.
COX-2 inhibitors are a subclass of nonsteroidal
anti-inammatory drugs (NSAIDs), among the
most common drugs consumed on the planet.
Older NSAIDs include drugs like Naprosyn,
which inhibits mostly COX-1; Advil

, which
inhibits COX-1 and COX-2; and Voltaren

and Mobic

, which mostly inhibit COX-2. The

newer drugs were developed because targeting
COX-2 reduced serious gastrointestinal side
effects like bleeding ulcers. However, aggressive
direct-to-consumer advertising meant that
drugs like Vioxx

and Celebrex

were taken
mostly by patients who had never had the GI
problems with the older, cheaper NSAIDs.
Just before Celebrex

and Vioxx

were
approved and launched, a group led by Garret
FitzGerald, MD, chair of the department of
Pharmacology, and director of the Institute
for Translational Medicine and Therapeutics
at Penn, observed that both drugs suppressed
prostacyclin in humans, as reected by its
major metabolite in urine, PGI-M. Based on
the potentially cardioprotective properties of
prostacyclin, which relaxes blood vessels and
unglues platelets in test tube experiments,
the team predicted that shutting down this
protection with inhibitors would cause heart
attacks and strokes.
More than ten years later, it is now clear what the
COX inhibitors do in the body. Eight placebo-
controlled, randomized trials, performed to
nd new uses of these drugs, showed that
they posed a cardiovascular hazard, similar
in magnitude to that resulting from being a
smoker or a diabetic, notes FitzGerald. Despite
this, controversy has continued about how all
this came about, until now.
Arguments against the proposed mechanism
were threefold. First, it was proposed that COX-
2 didnt exist under normal circumstances in
the blood-vessel lining and PGI-M came from
some other source. The kidneys were suggested
as the source by some researchers. Second, even
if blood-vessel prostacyclin was blocked, other
AUTUMN 2012
PAGE 19
protective mechanisms, especially formation
of nitric oxide (NO) would take over. And third,
although NSAIDs elevate blood pressure, it was
proposed that this observation was unrelated
to COX-2 and treating high blood pressure
would deal with the problem.
FitzGeralds group has now closed the loop
with its earlier clinical studies and answered
these questions in a paper just published in
Science Translational Medicine. In it, they
conrm that COX-2 is expressed in cells lining
blood vessels and that selectively removing it
predisposes mice to blood clotting and high
blood pressure. These mice, just like humans
taking COX-2 inhibitors, also see a fall in
PGI-M. More, the Penn group discovered that
COX-2 in lining cells controls the expression
of eNOS, the enzyme that makes NO in the
body. So, rather than replacing the missing
prostacyclin, as others have proposed, NO is lost
and amplies the effects of COX-2 inhibition
on the cardiovascular system, says FitzGerald.
Indeed, the lost NO may not be the only
step that magnies the effects of losing
prostacyclin. In a second paper, published in
April 2012, in the Proceedings of the National
Academy of Sciences, FitzGeralds group shows
that arachidonic acid, the fat broken down by
COX-2 to make prostacyclin, can be shunted
down another pathway to make a new series of
dangerous fats called leukotrienes when COX-
2 is disrupted.
Clinical studies have shown that those most
at risk from COX-2 inhibitors are patients
who already have heart disease. However, the
Penn group now suggests broader implications.
Here, the group resolves one aspect of the
controversy, showing that COX-2 disruption
causes hardening of the arteries in mice. This
result is provocative because randomized
trials of Vioxx

and Celebrex

in patients at
low risk of heart disease detected an increase
in heart attacks after patients had been taking
the drugs for more than a year. These current
Penn studies raise the disturbing prospect that
heart-healthy patients taking [COX-2 inhibitor]
NSAIDs for prolonged periods might be
gradually increasing their risk of heart attacks
and strokes by progressively hardening their
arteries.
However, its not all bad news, says FitzGerald.
This risk of hardening of the arteries was
diminished in mice by reducing leukotriene
formation, via blocking a critical protein
called the 5-lipoxygenase activating protein, or
FLAP. Inhibitors of FLAP are already in trials in
humans to see if they work in asthma. Perhaps,
FitzGerald concludes, they can now nd an
additional use protecting the heart from
[COX-2 inhibitor] NSAIDs.
Press statement from Penn Medicine (Raymond
and Ruth Perelman School of Medicine at the
University of Pennsylvania) and the University of
Pennsylvania Health System. Ed.
Conference Session Hand-outs & Presentations http://bit.ly/KZQN6N
Loose Connections Archives http://bit.ly/w7aHxc Public Service Announcements http://bit.ly/xves6v
Northern Kentucky Convention Center Cincinnati, Ohio August 9-11
2012 Learning Conference Living with EDS
AUTUMN 2012
PAGE 20
This was originally titled How to Talk to a Doctor
About Mental Illness, but the advice holds for
talking to your doctor about any illness. Ed.
O
K, I admit it, I dont like doctors. At all.
In fact, one might suggest I downright
hate them. I hate going to their appointments,
I hate being in their waiting room and I hate
talking to them.
The Ill Need Doctors
But the reality of the situation is this: sick people
need doctors. The mentally ill need doctors.
I need doctors. The doctor went to medical
school; I didnt. The doctor treats people like
me every day; I dont. The doctor carries a
prescription pad; I cant. No matter how smart
I might be, no matter how much research I do,
no matter how much knowledge I assimilate,
I am simply not an actual doctor. Talking to a
doctor is, however, still decidedly unpleasant.
Here are some things I have learned.
1. Dont expect your doctor to care about you.
It could happen, but it likely wont. Its
nothing personal, its just the way it is. Not
only are doctors explicitly taught not to
care about their patients, it really behooves
them not to care. They dont want to cloud
their clinical judgment of you and your
mental illness by liking you. They dont
want you liking them, as they will probably
have to do things youre not going to like.

And quite frankly, theres a decent chance
youre not going to get well, or you might
even die and if a doctor lets that affect him,
hed never be able to do his job.
2. This leads me to number two, dont get
upset and cry in your appointment. True,

HOW TO TALK TO A DOCTOR
sometimes this cant be avoided, but if you
can avoid it, you should. You crying sitting
across from an icy lump of stone is just
awkward and unpleasant for both of you.
All youll be getting out of that is the offer
of a very scratchy tissue.
3. Speak as clearly and specically as you
can about how you are doing. Saying
Im anxious is not nearly as helpful as
saying, Im so anxious I pulled out all my
eyelashes in the last month, or Im twice
as anxious as before the new med. Facts
are things the doctor can more easily work
with. If you dont tell your doctor whats
wrong he cant possibly help you.
4. The same goes for side-effects. You have
to clearly tell the doctor what side-effects
you are experiencing and how tolerable
they are. Saying, I have headaches is not
the best, but I have headaches that kept
me in bed two days in the last month so I
missed my sons birthday is a lot clearer.
Your doctor cant adjust your meds or
address your side-effects unless you make
it clear whats happening, and how much
it bothers you.
5. Dont get angry. Getting angry really ticks
doctors off and makes them dislike you,
not to mention the fact that it may factor
into your diagnosis in a not-so-nice way.
Try to be calm and rational. You might
feel angry with your doctor, but likely its
not really his fault. Youre likely expressing
anger because youre not getting better.
Understandable, but not his fault, and not
helpful in an appointment.
6. Know what you need to say and ask. Your
doctor has a very limited amount of time
AUTUMN 2012
PAGE 21
to spend with you so dont prattle on about
your cat. Be clear on what you need to
communicate before you go in, and make
sure you say it. Make sure you ask all the
questions you need. Write things down
ahead of time, or bring a friend if you
need help. It might be a long time before
your next appointment so make each one
productive for you.
Just Talk to Your Doctor
And to reiterate, your doctor is your source
of medical information use him. I get a lot
of questions about what people should do
with their treatment. Random people on the
Internet are not the people to ask, no matter
how much you might like or respect them.
Only you and your doctor know your personal
medical history and only you can ask the right
questions and get the information pertinent to
you.
Yes, talking with your doctor sucks, but seeing
as you have to do it, you might as well make it
work for you.
Natasha Tracy
You can nd Natasha Tracy on Facebook
or @Natasha_Tracy on Twitter.
We-Care.com: Shop with Purpose for EDNF
I
F you could donate a percentage of every
online purchase you make to EDNF,
wouldnt you do it? We-Care.com lets you do
that, with more than 2000 online merchants.
Just visit the Online Mall, use a coupon or a
link to a merchant's site, and shop on their
site as you normally would a percentage is
automatically donated to your cause. Better
yet, install the We-Care Reminder for Chrome
or Firefox. With the Reminder, your donations
will count (even if you forget to visit the Online
Mall). Learn more about the Reminder.
We-Care.com works with everything.
Well, nearly everything. Our merchants include
retail, travel, nancial services, and quite a bit
more. Book your ight and hotel. Rent a car.
Shop for books. Buy furniture and household
items. Send gifts. Search for apartments. Pick
out a cell phone plan. Order web hosting
and ofce supplies. Subscribe to magazines,
newspapers, DVD services, and even satellite
TV. You get the idea.
We work with causes to reach out to you, their
supporters, and ask you one small favor: Add
an extra click to your normal shopping and
support your cause. That's what we mean
by Shop with Purpose. Participation costs
nothing for organizations, and there's no extra
charge to you. Many merchants even offer us
special deals that save you money.
We-Care.com isn't about making one big
donation, nor is it trying to replace the donations
you normally make. We-Care.com works best for
organizations when lots of people participate
frequently. So make it a habit every time you
shop. Install the plug-in. Get others to do the
same. Even get your business on board. Be a
part of the We-Care.com Community, because
together we make a difference.
AUTUMN 2012
PAGE 22
A
N overgrowth of bacteria in the gut has
been denitively linked to Irritable Bowel
syndrome (IBS) in the results of a new Cedars-
Sinai study which used cultures from the small
intestine. This is the rst study to use this gold
standard method of connecting bacteria to the
cause of the disease that affects an estimated 30
million people in the United States.
Previous studies have indicated that bacteria
play a role in the disease, including breath tests
detecting methane a byproduct of bacterial
fermentation in the gut. This study was the
rst to make the link using bacterial cultures.
The study, in the current issue of Digestive
Diseases and Sciences, examined samples of
patients small bowel cultures to conrm
the presence of small intestinal bacterial
overgrowth or SIBO in more than 320
subjects. In patients with IBS, more than a
third also were diagnosed with small intestine
bacterial overgrowth, compared to fewer than
ten percent of those without the disorder.
Of those with diarrhea-predominant IBS, 60
percent also had bacterial overgrowth.
While we found compelling evidence in the
past that bacterial overgrowth is a contributing
cause of IBS, making this link through bacterial
cultures is the gold standard of diagnosis, said
Mark Pimentel, MD, director of the Cedars-
Sinai GI Motility Program and an author of the
study. This clear evidence of the role bacteria
play in the disease underscores our clinical
PHYSICIAN DEFINITIVELY LINKS IRRITABLE
BOWEL SYNDROME & BACTERIA IN GUT
trial ndings, which show that antibiotics are a
successful treatment for IBS.
IBS is the most common gastrointestinal
disorder in the U.S., affecting an estimated 30
million people. Patients with this condition
suffer symptoms that can include painful
bloating, constipation, diarrhea or an
alternating pattern of both. Many patients try
to avoid social interactions because they are
embarrassed by their symptoms. Pimentel has
led clinical trials that have shown rifaximin, a
targeted antibiotic absorbed only in the gut, is
an effective treatment for patients with IBS.
In the past, treatments for IBS have always
focused on trying to alleviate the symptoms,
said Pimentel, who rst bucked standard
medical thought more than a decade ago when
he suggested bacteria played a signicant role
in the disease. Patients who take rifaximin
experience relief of their symptoms even after
they stop taking the medication. This new
study conrms what our ndings with the
antibiotic and our previous studies always led
us to believe: Bacteria are key contributors to
the cause of IBS.
The study is a collaboration with researchers
at Sismanogleion General Hospital in Athens,
Greece, and at the University of Athens; this is
a press statement, and not a full review of the
research. Ed.
Acceptance doesnt mean resignation; it means
understanding that something is what it is and
that theres got to be a way through it.
Michael J. Fox
AUTUMN 2012
PAGE 23
Te Magazine About Living With EDS
PUBLISHED BY
FOUNDER
Nancy Hanna Rogowski
19571995
Executive Director
Shane Robinson
Board of Directors
Elliot H. Clark, Chair
Judge Richard P. Goldenhersh, Vice Chair
Richie Taffet, BS, MPH, Secretary
Richard Malenfant, Treasurer
Sandra Aiken Chack
Deb Makowski
Linda Neumann-Potash, RN, MN, CBN
Richard Riemenschneider, Director of Outreach
Janine Sabal
Brad Tinkle, MD, PhD
To contact EDNF, email ednfstaff@ednf.org; write to
Ehlers-Danlos National Foundation, 1760 Old Meadow
Road, Suite 500, McLean, Virginia 22102; or call
(703) 506-2892.
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Professional Advisory Network
Patrick Agnew, DPM
Peter Byers, MD
Edith Cheng, MD
Heidi Collins, 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
John Mitakides, DDS, FAACP
Raman Mitra, MD, PhD
Linda Neumann-Potash, RN, MN
Terry Olson, PT
Mary F. Otterson, MD, MS
Melanie Pepin, MS, CSG
Alan Pocinki, MD, FACP
Elizabeth Russell, MD
Ulrike Schwarze, MD
Karen Sparrow, PhD
Brad Tinkle, MD, PhD
Mike Yergler, MD
L OOS E CONNECTIONS
AUTUMN 2012
PAGE 24
Editor/Graphics & Type
Mark C. Martino
Editor, Medical Section
Amy Bianco
Copy Editor
Elise Makhoul
Front Cover
3D Conceptual Render, Mark C. Martino
Page Headers
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Copyright Mayang Murni Adnin, 2004