LooseConnections 2012 Autumn

7/27/2019 LooseConnections 2012 Autumn

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L O O S E CONNECTIONS

Te Mgazie Abou Livig Wih EDS Autumn 20

EDNF Center for Clinical Care & Research Clinic Endowment Fund.................................................. 2

Conference Photographs...................................................................................................................... 4

Being Seths Mom Len Cook .............................................................................................................. 7

Going for the GoldSara 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 DoctorNatasha Tracy ........................................................................................... 20

Physician Denitively Links Irritable Bowel Syndrome & Bacteria in Gut........................................... 22

Publisher's Index ............................................................................................................................ 23
http://www.ednf.org/


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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 rst EDNF Center for Clinical Care and Research. The project isstill forming, including where it might be located.

improving patient treatment

through superior physician trainingand scientific advancement

Clinic Endowment Fund

Ehlers-Danlos National Foundation: Who we are.

Nancy Hanna Rogowski (19571995) ounded Ehlers-Danlos National Foundation(EDNF) in 1985. We are the world leader in knowledge about the group o 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 creatingtools, resources and guidance or those born with EDS by:

Generating and distributing accurate and responsible inormation; Providing a network o support and communication; and Fostering and unding research.

Support for Living With EDS:Its what we do, every day.

For more than 25 years, we have been the authority or EDS: deliveringrecommendations or those seeking diagnosis o problems that have been a lie-longmystery; oering advice and emotional validation or the newly diagnosed wrestlingwith what a genetic disorder means or them and their amilies; and providing tipsor those living with EDS or years, including day-to-day inspiration and news. Inrecent years, EDNF has been building new community connections every day.

Our Facebook page has grown rom just over 1,000 to a bustling electronicvillage o nearly 8,000 people aected by EDS, with a potential reach through


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AUTUMN 2012PAGE 3

our ans to more than 2.2 million people. Join our Facebook page. Our EDNF Inspire Online Community has become one o the most activesupport sites on the Inspire network.Visit Inspire here.

Our Learning Conerence is now a truly annual event, and has broken previousrecords each o the past three years, rising to nearly 600 attendees in 2012.

Our website impressions are skyrocketing, rising rom a worldwide rankingaround one million in 2010 to 679,644 in September 2012. Our bandwidthlimit has been increased three o the past six months. Explore our website.

We are dedicated to quality patient support, and our numbers show this clearly. Butsupport 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 acility that will be the world center or EDS,rom physician training and clinical practices to scientic research. The opportunitiesare boundless; you can help the lives o children and amilies by advancing the

progress towards solving a genetic disorder that aects the undamental tissue othe body.

There are a series o partnership and support levels that will ensure your participationis recognized. You have the chance to join us in this lie-changing endeavor andimprove our uture, rom site selection through scientic breakthroughs and beyond.

This is just the beginning. Our dream doesnt end with one center: we envision aglobal network o 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.
http://www.facebook.com/pages/EHLERS-DANLOS-NATIONAL-FOUNDATION/294028895335http://www.inspire.com/groups/ehlers-danlos-national-foundation/http://www.ednf.org/http://bit.ly/Tay76Chttp://bit.ly/Tay76Chttp://www.ednf.org/http://www.inspire.com/groups/ehlers-danlos-national-foundation/http://www.facebook.com/pages/EHLERS-DANLOS-NATIONAL-FOUNDATION/294028895335http://www.ednf.org/


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My daughter Taylor (middle let) was diagnosed inAugust 2011 and her best riend Marissa (ar let) wasdiagnosed in April 2012. They have been riends since6th grade and have cheered together on the school and

competition squads. As long as I can remember, oneor both were injured in some way, and ractures cameeasily due to the strenuous activity in cheerleading. Itseemed logical to do step away rom cheerleading andocus on rehab and core strengthening. Part o rehabwas a two-week intensive PT program at CincinnatiChildren's Hospital run by Stephanie Powell. Duringthe program they met Anna (ar right) and developedanother wonderul riendship. A picture speaks athousand words; as you can see this picture showsthree very happy, determined girls with their avoritephysician, Dr. Brad Tinkle.

2012 Learning ConferenceLiving with EDSNorthern Kentucky Convention CenterCincinnati, Ohio August 9-11

Stephanie Spitz rom South Carolina (let) andMary-Kate Wells rom Massachusetts (right).


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At banquet(left to right):

Sandra Barr (TX)

Lauri McVicker (KY)

Rhonda Edwards(spouse o EDSer)

Charlotte (standing)

Eve Adamson

Ann(Charlotte's daughter)

Meryl Brutman

This picture is o my sonNico, age 12, in the Northern

Kentucky Convention Center.

We were both diagnosedwith classic EDS in June

o 2011 and this wasour rst conerence.

We ound the conerenceun and inormative and

look orward to next year.

Amy Monte, Ohio


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LET me start by saying that Im not a doctor,

nurse, teacher or even a writer. Im not anexpert on EDS. Im just the mom o a little boy

who has EDS.

My ten-year-old son, Seth, was diagnosed with

EDS when he was ve. Being my ourth child, I

always knew he was dierent. 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, wasdouble jointed in everywhere, but we had been

told that it was no big deal: it was just a fuke.

Nothing prepares you or 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 ades

away except the beautiul smiling ace o your

child. I wondered, How can this be? What didI do wrong? Is it atal? Can it be cured? All o

these thoughts shoot through your head in an

instant like the end o a reworks display, one

on top o another.

Ive learned a lot since that day in the cold

sterile doctors oce. Ive learned that EDS is

not atal, but that its progressive; that there

will never be a cure; and that it will be a lie

long journey or him. Not much is knownabout EDS; even many doctors have little, i

any, knowledge; and any EDS knowledge they

have may not be on the type o EDS Seth has.

It was obvious that to help Seth, I had to learn

on my own, and quickly. I discovered Seths

body will orever be prone to dislocations o

any and every joint, and not just dislocations

rom injuries but spontaneous dislocations

that strike at any moment with no rhyme or

BEING SETHS MOM

reason. At times he suers rom three or more

dislocations a day. Its not a question o, Is hein pain today? but rather, How much pain is

in at this moment?

My son at a young age taught me that being

dierent 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 alls, getsup too ast, or or no reason at all his little body

just alls apart.

Many o the things Ive learned were out o

necessity and on the fy. First and oremost, I

believe that you have to do your own research

With so little known about EDS, you cant expect

the medical sta you meet will know what you

know. I research prior to meeting a new doctor

and I take my printed research with me; i Imgoing to the dentist or to a pain management

specialist, Ill bring the appropriate inormation

with me. I 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-conrontational

attitude, its generally received well, and I leave

the appointment either with answers or with a

path to help me nd answers.

I 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 o or a ew days at his hospital, and the

doctor would then break my child and put

him back together over and over to see how


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his body responds. Can you imagine anyone

agreeing to this? I was shocked to learn later

that he was head o the orthopedic unit o

his high-prole hospital. I couldnt get out o

there ast enough, and I never went back. It

is, however, a wonderul acility and I would

highly recommend it to anyone, as long as you

dont see the head o orthopedics.

Second, I think you have an obligation to

teach those in your childs lie as much as they

are willing to learn, especially teachers, school

nurses, day-care workers, parents o their best

riends, and anyone who may be the authority

in charge o your child in your absence. EDNF

has some wonderul tools to help you with

this. I print An Educators Guide each year(available free of charge

here, rom 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 o things thatmay need adjusted rom the norm, such as a

bookbag on wheels or an extra set o books or

the house that will help protect his shoulders

rom carrying a heavy bookbag. The brochure

lists many things, many o which you may

not need, but showing educators the list o

possibilities and then highlighting the ones

that you actually need creates understanding

rom the beginning. It is much easier to have

a plan in place that you may not need than totry to put one in place in the middle o a crisis.

Third, i your child is young, keep a notebook

handy. Document each and every injury,

whether you are with your child at the time o

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 oce 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 o losing

your child even or 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 eels 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 oten 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 or pain

They want to see a

bruise, or know there

was a all. Its hard or

them to understand

chronic pain with

no cause, or the that

sometimes he can be

walking just ne andsuddenly his legs or arms just quit. So when he

looks at me and says Mom, I comort 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 o, or Big

boys dont cry. You cant judge anothers pain,

its impossible.

Fith, 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 or 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. O

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.
http://www.ednf.org/index.php?option=com_content&task=view&id=2127&Itemid=88889255http://www.ednf.org/index.php?option=com_content&task=view&id=2127&Itemid=88889255http://www.ednf.org/index.php?option=com_content&task=view&id=2127&Itemid=88889255http://www.ednf.org/index.php?option=com_content&task=view&id=2127&Itemid=88889255http://www.ednf.org/


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practice or a meet, but these are chances were

willing to take to give him a sense o 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 o 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 or 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

dierently i he has a brace, a wrap or is ina wheelchair than at other times. Ive also

realized Im probably guilty mysel. 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 oten that he just wants to be a

real boy. This is the hardest thing or 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 ear, but take a deep breath and allow, like

bounce houses: the chance o 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

Ater all, its his risk. I cant protect him rom

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 araid o everything

that he misses out on lie 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 o the time,

he decides when he wants to ice an injury, i he

wants meds, and so on. Hes only ten, so thereare times that I or a doctor have to take control

but when he can we allow him that right.

As I said beore, Ive had no training or medical

education. Im just a mom doing the best I can

to care or my son with an invisible syndrome,

while letting him live his lie to the best o his

ability. With the grace o God, well make it

through.

L C

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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The best athletes in the world are, essentially,

mutants. Somewhere along the line theirgenetics jumbled in such a way that gave them

an advantage over the everyman. Even the

healthiest o 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 ecient when it comes

to digesting protein or prevents them rom

getting a specic disease? Those mutations willget passed down silently, making the human

race better.

Ehlers-Danlos doesnt make me aster or

stronger physically, but i 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 ater the rst all, Id be down or the

count. And I wont be winning any races anytime 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 o lemonade: colorul socks becoming

brace covers, canes decorated with stickers

smiles even through the pain. We are Olympicmedalists because o what weve overcome;

now we just have to nd the sport that denes

us. Up or armchair ootball, anyone?

Sr E. Srr

GOING FOR THE GOLD

AFRIEND o mine suggested, as we were

watching the Olympics, that there shouldbe 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 eel or the true awesomeness o

their eats. We laughed at the commentators

who complained that the pace o the athletes

was so slow, when they were, in reality, running

at least twice as ast as anyone we personally

knew. But it does make you wonder about

expectations. What about that person whotrained his or her whole lie or the Olympics

and got ourth place? Does that make them

any less o an athlete than the person who got

gold, especially when the times or scores were

thousandths o a point dierent?

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 orthose whose success is dened by physical

tness. It makes one think, i 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 emurs (thigh bones) that make him, quiteliterally, built or 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

powerul fips substantially easier. The average

height o a basketball player is 6'7". Id like to

see that basketball player attempt a fip on the

uneven bars hed likely brush the ground!


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AUTUMN 2012PAGE 11

he placed a portacath under my let clavicle.

Dont you love when EDS rears its head?

Ater warning about not hyperextending my

neck, about dislocations and subluxations, and

discussing my diculties with anesthesia, I elt

comortable going ahead. Not only did I wake

up during the bronchoscopy ater a megadose

o Versed during the bronchoscopy, but I also

woke up during the port placement in the OR

ater propool. I guess all the years o pain medshave given me quite a tolerance. Poor surgeon,

he laughed when I asked i he wasnt nished

yet. Then the un began hed reviewed the

EDNF website and had learned about CEDS, so

he had added extra stitches and steristrips. But

when I went ater ten days or him to check my

incision, it hadnt healed much, so he said to

come back in two weeks. There we were.

The ollowing week was so ull o stress, worryand tears. I had to wait over two hours or lab

work to be drawn the day beore chemotherapy

began. Hours and hours were spent researching

the chemo drugs that this wonderully kind,

gentle giant o an oncologist had told me I

was to have. My pain levels went through the

roo with lack o sleep, nonstop back pain and

sciatica, and meds did little to help.

Finally the day arrived, and chemo beganYears o being an RN had never prepared me or

this. I was terried o the poison dripping into

my body, what could happen, the prognosis

o a ew months to perhaps a ew years, and

suddenly it was time. Thankully the portacath

worked without a hitch, and outside o a small

panic attack the inusion went ne.

Stitches on the insertion site had to remain in

place or ve weeks beore I healed; thankully

FACING CANCER WITH

EHLERS-DANLOS SYNDROME

AMONTH ago in April, I was just me,

battling the chronic pain and othersymptoms o Classical EDS. I went to bed and

awakened to nd the right side o my neck

was swollen terribly and exquisitely painul. 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 ace drained o color as he

examined me. That day I had a CT o my

neck and upper chest, then a needle biopsy oseveral o 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 or 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

let, though the inection did. During that time,my low back and sacrum hurt like never beore,

with sciatica down my right leg sometimes

knee-length and other times down the outside

o the leg to my oot. Even with my heavy

medications, it stayed at 8 to 10 pain on the

110 pain scale.

The next two weeks were a whirlwind o CT

scans, PET scan, MRIs, and a bone scan ater

a bronchoscopy. Every day was something;I needed rest so badly but there was not any

time. Then came the ormal diagnosis o stage

our lung cancer with metastases. I couldnt

breathe; my husband and I held each other

and cried. We couldnt slow down and work

through our eelings, we had to keep moving

because time was o the essence.

An appointment was made with a surgeon I

had known rom working as a CVICU RN, so


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AUTUMN 2012PAGE 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 o chemo, I wondered

i many symptoms were part o my EDS. The

worst was abdominal spasms, eeling as i large

shards o broken glass were tumbling through

my intestines, a horrible pain. Muscle pain and

spasm rom the EDS or side eect o chemo?

Recurrent headaches o migraine quality

beginning at the rear skull base and actually

caused acute pain when touching my skull

in certain placeswere they chemo aecting

neuropathways or EDS-impacted tissues trying

to heal? Amazingly, the sciatica and sacral paindisappeared or a long time, recurring only at

a raction o the previous levels; who knows

why, but a welcomed result!

GI symptoms continued throughout the

three-week chemo cycle: inactive nausea, no

appetite, refux in spite o meds that have

worked or a very long time, severe constipation

unresponsive to most therapies, all hard to live

with, but typical o many with EDS. Eatingwith nausea is so very odd: sweets taste awul,

lemon or salty seem to work or me. Some days

eating and drinking are just so hard, other days

lie is almost normal.

The days where lie is almost normal, we

rejoice! I head outside to enjoy the wonders

o nature with my dog at my side. When my

husband is o rom work, we head to our patch

o woods (acres and acres o trees, dogwoodsand redbuds, that I call Serenity) to sit quietly

where there are no people sounds, no cars, only

birds and the breeze. An occasional message

rom a nearby donkey makes us laugh, wild

turkeys respond to my hubbys call only to nd

humans instead o 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

uture without earing interruption by others

brings back the joy o lie and love; it reminds

me that the uture is what I make o it no matter

how long it lasts.

Suddenly, at a time where I was told that I would

eel good, nausea again rears its ugly head; the

meds are not working. Back to childhood days

o fat Coke and saltines, the pounds begin to

all o again because healthy oods just wont

go down. Finally I phone my oncologists oce

or 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 o interactions with other

meds I am on with my EDS; it seems it wouldrequire much adjusting and rankly, am I up to

doing that?

Pain has returned with a vengeance ater a two-

week absence; how I had hoped it was to be

gone while I was on this journey! Guess one

should be thankul or it being so lessened or

two o three weeks.

So the journey continues, with prayers somany times a day. My aith is strong, and my

God is with me; I can eel the presence when I

pray or help or to be with me. I eel so sad or

others who do not have this daily walk with

their God, and cannot imagine their journey

with cancer.

Se Jnkin, RNEDNF Triage Manager

This article is unnished: 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.


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AUTUMN 2012PAGE 13

AFTER spending a couple o years working

with the EDNF Facebook page, and moreyears beore that than I care to count dealing

with bulletin boards and various Internet

orums, I have some guidelines or 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 helpul when we answer.

1 Dont ask too many questions at once. Onmany sites theres a character limit to posts, rsto all. Second, its hard or the administrator

(admin) to keep track o 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 o inormation you get back. Its

probably going to be easier or everyone i you

split your questions into a couple o sequential

posts, and let a little time pass between them,so you can absorb the answers and perhaps

write more ocused ollow-up questions.

2 I know how exciting it can be to nally eelpart o something, to eel youre not crazy

anymore and to drink up a new orum 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 rom one personall 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, comprehensivequestion. For instance, How do you deal with

EDS? is ar 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 & FEEDINGOF INTERNET ADMINISTRATORS

shoulder? is much more likely to get an answer

thats manageable or both the questioner andthe person answering.

4 Do a little bit o research; at least take a lookat the days posts. Theres nothing quite so

annoying to an admin as answering the same

question three or our times in a row. Day ater

day is one thing, admins are resigned to the

act 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 besurprised i you get a curt, See previous posts.

4a Corollary: think about reading theprevious posts in a thread beore 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 newseed, or a riend o yours makes acomment 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 rom having to repost

the answer already in the thread, everyone in

the thread might be saved rom 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 havemuch o a memory, and the admin may well

post inormation that you dont need to hear,

but that might need to be seen by someone

whos never seen the answer beore. Be patient

with getting material youve seen beore

Theres probably a reason the admin posted it

yet again, or possible s/he just made a mistake,

but be patient.


14/24

AUTUMN 2012PAGE 14

6 Dont say anything to anyoneparticularlythe people trying to help youthat you

wouldnt say to their ace i they were standing

right in ront o you. Its likely almost no

one helping you is getting paid to put up

with rudeness or personal attacks, althoughtruthully, 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 dierently, dont sayanything under you onscreen name that you

wouldnt say i you were using your own name.

6b Troll , verb [trans.], informal computingsend (an e-mail message or posting on the

Internet) intended to provoke a response rom

the reader by containing errors.

troll, noun, informal computing: an e-mailmessage or posting on the Internet intended to

provoke an indignant response in the reader.

Dont. Please. Justdont.

Mr C. MriEditor-in-Chie

IF you have chronic back pain, you mightnd that your back pain is interering with agood nights sleep. One o 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 or? There really is no

best mattress or a person with chronic back

pain. The real issue is which mattress is the

best one or you. In general, many people with

chronic back pain nd that waterbeds, airbeds

and oam mattresses are uncomortable and

increase back pain because they dont provide

needed support. Firmer mattresses are typically

reported to be more comortable or someone

with back pain.

I rm is good, is the most rm best? Not

necessarily. According to a joint clinical

guideline rom the American College o

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 BeddingOut with the old: I you always sleep in the

same spot, as most people do, uncomortable

indentations may orm 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. I a

ormerly comortable mattress is now leavingyou in pain in the morning, it may be time to

get a new one, especially i youve been careul

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 o plywood between

the mattress and box spring. Or, i you want less

rmness, add padding on top o 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 o 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 fat that

your head is lower than your neck and the rest

o your spine.


15/24

AUTUMN 2012PAGE 15

One o the objectives o the study was to

look or genotypephenotype correlationsa 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 deects to certain

symptoms. Toward this end they made two

important observations.

First, they ound that, unlike the situation

with some other heritable disorders oconnective tissue, with cEDS it seems to make

no signicant clinical dierence whether the

causative mutation is structural or null. In

osteogenesis imperecta, which is caused by a

deect 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 mutation2. This is because

with a null mutation, the remaining allelecontinues to unction 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 unction

o 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, theyall have the eect o reducing the amount o

normal type V collagen available in the extra

cellular matrix. Thus the group asserts that

all o the known COL5A1/COL5A2 deects

can be considered unctionally 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 o researchers in Belgium led by Dr.

Anne De Paepe has been working to uncovermore deects to type V collagen that would

be diagnostic or Ehlers-Danlos syndrome,

classic type. Genetic testing currently uncovers

mutations in about hal o patients meeting

clinical criteria or cEDS. While any signicant

expansion o the database o known collagen

V mutations would improve a cEDS patients

chances o receiving molecular conrmation

o his or her diagnosis, Dr. De Paepes group

goes so ar in a orthcoming paper1 as to assertthat 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% o

the time.

Dr. De Paepes group employed exhaustive

biochemical and molecular analytical

techniques to look or causal involvement o

collagen V in a cohort o 126 patients withdiagnosed or suspected cEDS. They ound that

48 patients had null COL5A1 mutations,

where one allele o the gene (we have two,

one rom each parent) had been rendered

non-unctional, 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 unctioning. In

addition, in two patients the outcome othe COL5A1 mutation was undetermined.

Mutations in the COL5A2 gene were ound in

13 patients; all o them were structural. In all,

the group added 49 COL5 mutations to the 72

in the database o known cEDS variations. No

other genes were implicated.

1Symoens S, et al: Comprehensive molecular analysisdemonstrates type V collagen mutations in over 90% opatients with classic EDS and allows to rene diagnosticcriteria,Human Mutation, June 13 [epub ahead o print].

2Leistritz et al: COL3A1 haploinsuciency results in avariety o Ehlers-Danlos syndrome type IV with delayedonset o complications and longer lie expectancy, Genetics in Medicine 13(8):717-722, 2011.


16/24

AUTUMN 2012PAGE 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 deect in collagen V would perturb this

regulatory unction and result in a disorganized

extra cellular matrix. The authors note that

there is a subset o structural COL5 mutations

that appear to disrupt the normal interaction

o type V collagen with other constituents in

the extracellular matrix.3 Work is continuing to

see what eects these deects might have on

phenotypes.

Thus, except or the act that all o the patients

with COL5A2 mutations were located on the

more severe end o the cEDS spectrum than

those with COL5A1 mutations, Dr. De Paepesgroup ound no

signicant correlation

between the type

o COL5 mutation

and the patients

phenotype. It made

no dierence whether

the mutation was

structural or null or

i it were structural,what kind o alteration

to the gene it was.

For diagnostic purposes, then, it would appear

that testing or loss o expression o one COL5A1

allele is undamental. Dr. De Paepes group was

able to conrm such loss in seven patients

or whom the underlying mutation could not

be ound. This brought to 93 the number o

patients or whom causal involvement o typeV collagen could be reported, leaving 33 o

the original cohort in whom no mutation was

ound, or in whom a null-allele was excluded,

or the presence o a null COL5A1 allele could

be neither conrmed or excluded.

Perhaps the most striking nding o the

study and the other major observation Dr

De Paepes group was able to make regarding

genotypephenotype correlation was that the

presence o all o the major diagnostic criteria

or cEDS is a reliable predictor that a type V

collagen mutation will be ound. The patients

in the study were divided into two groups based

on their clinical proles. The rst group, o 102

patients, ullled all three o the major criteria

or classic EDS: skin hyperextensibility; skin

ragility resulting in widened, atrophic and

cigarette paper scars; and joint hypermobility

Group 2 consisted o 24 patients who met only

two o the major criteria. All o the patients

in group 2 were among the 33 or whom

no causative deect in collagen V could bereported. This gave the

authors condence to

assume that technical

limitations kept them

rom nding mutations

in the remaining six

patients who met all

three major criteria or

cEDS. So, o the 102

patients who met allmajor criteria or cEDS,

the authors ound

evidence o a type V

collagen deect in 93, about 90%. The authors

thus propose that the Villeranche criteria or

cEDS be made more stringent to require that all

three major criteria be met.

It is interesting to note that in this study all

o the patients in group 2 were missing thesame major criterion: (clinically signicant)

dystrophic scarring. The authors point out

that biochemical collagen analysis may still

be necessary (or contributory) or dierential

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 o binding partners in-teracting with the 1-N-propeptide o type V collagen,Biochem J433:371381, 2011.

Of the patients who

met all major criteria

for cEDS, the authors

found evidence of a

type V collagen defectin about 90%.


17/24

AUTUMN 2012PAGE 17

easy bruising or amily history might suggest it.

But the biggest impact o this study is likely to

be on the dierential diagnosis between cEDS

and Ehlers-Danlos syndrome, hypermobility

type. Here the more stringent cEDS diagnostic

criteria will be crucial, or there is no molecular

test or hEDS. At present the two can be

dicult to dierentiate in patients with a mild

expression o the cEDS phenotype. Many hEDS

patients also have sot, velvety skin (though

the authors point out that it is not as doughy

as in cEDS patients); it is dicult to measure

skin hyperextensivity, which many hEDS

patients exhibit to some degree; and o course,

joint hypermobility is the most important

major criterion or hEDS. A urther challenge is

presented by the surprising nding in this studythat in two thirds o the mutation-positive

patients the mutation was shown to occur de

novo; that is, it had not been passed down rom

September 29, 2012

10:00 am 2:00 pm

THE Drug Enorcement Administration(DEA) has scheduled another NationalPrescription Drug Take-Back Day which will

take place on Saturday, September 29, 2012,

rom 10:00 a.m. to 2:00 p.m. This is a great

opportunity or those who missed the previous

events, or who have subsequently accumulated

unwanted, unused prescription drugs, to saely

dispose o 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 o unwanted or expired

medications or sae and proper disposal.

DEA Administrator Michele M. Leonhart said,

While a uniorm system or prescription drug

a parent. Thus amily history would provide no

guidance in most cases. On the other hand

with the accuracy o molecular testing or 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 or the various EDS subtypes. I

they do indeed adopt more stringent diagnostic

guidelines or cEDS, we can expect to see a

greater emphasis placed on skin ragility by

clinicians. Poor wound healing, spontaneous

splitting o the skin, and the tell-tale cigarette

paper scars over joints will become a sine qua

non o Ehlers-Danlos syndrome, classic type.

Amy BcEditor, Medical Section

Got Drugs? National Take-Back Initiativedisposal 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 o our

state, ederal, local, and tribal partners and DEA

thanks each and every one o them or their

eorts on behal o the American people.

Another advantage o this program is itdiscourages people rom fushing drugs down

their toilets. Drugs improperly disposed o wind

up in rivers and lakes where they harm aquatic

lie 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 or a collection

site near you.
https://www.deadiversion.usdoj.gov/SEARCH-NTBI/https://www.deadiversion.usdoj.gov/SEARCH-NTBI/http://www.ednf.org/


18/24

AUTUMN 2012PAGE 18

COX-2 INHIBITOR NSAIDS &

CARDIOVASCULAR RISK EXPLAINED

AFTER nearly 13 years o study and intense

debate, a pair o new papers rom thePerelman School o Medicine, at the University

o Pennsylvania have conrmed exactly how a

once-popular class o anti-infammatory drugs

leads to cardiovascular risk or people taking it.

It has been almost eight years since Vioxx

was withdrawn by Merck rom the market,

provoking an intense controversy about the

role inhibitors o the enzyme COX-2 play in

causing heart attacks and strokes. Since then,other drugs in the class rom Pzer, Novartis,

and Merck have been withdrawn (Bextra);

have ailed 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 o two similar enzymes that churn

out short-lived ats called prostaglandins.

The other, COX-1, works in platelets cellsin the blood that stick together in the rst

stages o clotting. COX-2 is active in the cells

that line blood vessels. These enzymes have

diverse, potent, and oten contrasting eects

in the body. For example, low-dose aspirin

protects against heart attacks and strokes by

blocking COX-1 rom orming a prostaglandin

called thromboxane A2 in platelets. On the

other hand, COX-2 is the more important

source o prostaglandins, particularly onecalled prostocyclin, which causes pain and

infammation.

COX-2 inhibitors are a subclass o nonsteroidal

anti-infammatory 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 targetingCOX-2 reduced serious gastrointestinal side

eects 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 beore Celebrex and Vioxx were

approved and launched, a group led by Garret

FitzGerald, MD, chair o the department oPharmacology, and director o the Institute

or Translational Medicine and Therapeutics

at Penn, observed that both drugs suppressed

prostacyclin in humans, as refected by its

major metabolite in urine, PGI-M. Based on

the potentially cardioprotective properties o

prostacyclin, which relaxes blood vessels and

unglues platelets in test tube experiments

the team predicted that shutting down this

protection with inhibitors would cause heartattacks and strokes.

More than ten years later, it is now clear what the

COX inhibitors do in the body. Eight placebo-

controlled, randomized trials, perormed to

nd new uses o these drugs, showed that

they posed a cardiovascular hazard, similar

in magnitude to that resulting rom being a

smoker or a diabetic, notes FitzGerald. Despite

this, controversy has continued about how allthis came about, until now.

Arguments against the proposed mechanism

were threeold. First, it was proposed that COX-

2 didnt exist under normal circumstances in

the blood-vessel lining and PGI-M came rom

some other source. The kidneys were suggested

as the source by some researchers. Second, even

i blood-vessel prostacyclin was blocked, other


19/24

AUTUMN 2012PAGE 19

protective mechanisms, especially ormation

o 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 all in

PGI-M. More, the Penn group discovered thatCOX-2 in lining cells controls the expression

o 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 eects o COX-2 inhibition

on the cardiovascular system, says FitzGerald.

Indeed, the lost NO may not be the only

step that magnies the eects o losing

prostacyclin. In a second paper, published inApril 2012, in the Proceedings o the National

Academy o Sciences, FitzGeralds group shows

that arachidonic acid, the at broken down by

COX-2 to make prostacyclin, can be shunted

down another pathway to make a new series o

dangerous ats called leukotrienes when COX-

2 is disrupted.

Clinical studies have shown that those most

at risk rom COX-2 inhibitors are patients

who already have heart disease. However, the

Penn group now suggests broader implications

Here, the group resolves one aspect o the

controversy, showing that COX-2 disruption

causes hardening o the arteries in mice. This

result is provocative because randomized

trials o Vioxx and Celebrex in patients at

low risk o heart disease detected an increase

in heart attacks ater patients had been taking

the drugs or more than a year. These current

Penn studies raise the disturbing prospect that

heart-healthy patients taking[COX-2 inhibitor]

NSAIDs or prolonged periods might be

gradually increasing their risk o heart attacks

and strokes by progressively hardening theirarteries.

However, its not all bad news, says FitzGerald

This risk o hardening o the arteries was

diminished in mice by reducing leukotriene

ormation, via blocking a critical protein

called the 5-lipoxygenase activating protein, or

FLAP. Inhibitors o FLAP are already in trials in

humans to see i they work in asthma. Perhaps

FitzGerald concludes, they can now nd anadditional use protecting the heart rom

[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 ConnectionsArchives http://bit.ly/w7aHxc Public Service Announcements http://bit.ly/xves6v

Northern Kentucky Convention Center Cincinnati, Ohio August 9-112012 Learning ConferenceLiving with EDS
http://bit.ly/KZQN6Nhttp://bit.ly/w7aHxchttp://bit.ly/xves6vhttp://bit.ly/xves6vhttp://bit.ly/w7aHxchttp://bit.ly/KZQN6Nhttp://www.ednf.org/


20/24

AUTUMN 2012PAGE 20

This was originally titled How to Talk to a Doctor

About Mental Illness, but the advice holds fortalking to your doctor about any illness. Ed.

OK, I admit it, I dont like doctors. At all.In act, one might suggest I downrighthate 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 o 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 o you and your

mental illness by liking you. They dontwant you liking them, as they will probably

have to do things youre not going to like.

And quite rankly, theres a decent chance

youre not going to get well, or you might

even die and i a doctor lets that aect 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 i you

can avoid it, you should. You crying sittingacross rom an icy lump o stone is just

awkward and unpleasant or both o you

All youll be getting out o that is the oer

o 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 helpul as

saying, Im so anxious I pulled out all my

eyelashes in the last month, or Im twiceas anxious as beore the new med. Facts

are things the doctor can more easily work

with. I you dont tell your doctor whats

wrong he cant possibly help you.

4. The same goes or side-eects. You have

to clearly tell the doctor what side-eects

you are experiencing and how tolerable

they are. Saying, I have headaches is not

the best, but I have headaches that keptme 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-eects unless you make

it clear whats happening, and how much

it bothers you.

5. Dont get angry. Getting angry really ticks

doctors o and makes them dislike you,

not to mention the act that it may actorinto your diagnosis in a not-so-nice way

Try to be calm and rational. You might

eel angry with your doctor, but likely its

not really his ault. Youre likely expressing

anger because youre not getting better

Understandable, but not his ault, and not

helpul in an appointment.

6. Know what you need to say and ask. Your

doctor has a very limited amount o time


21/24

AUTUMN 2012PAGE 21

to spend with you so dont prattle on about

your cat. Be clear on what you need to

communicate beore you go in, and make

sure you say it. Make sure you ask all the

questions you need. Write things down

ahead o time, or bring a riend i you

need help. It might be a long time beore

your next appointment so make each one

productive or you.

Just Talk to Your Doctor

And to reiterate, your doctor is your source

o medical inormation use him. I get a lot

o 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 inormation pertinent to

you.

Yes, talking with your doctor sucks, but seeing

as you have to do it, you might as well make it

work or you.

Nas rcyYou can nd Natasha Tracy on Facebook

or @Natasha_Tracy on Twitter.

We-Care.com: Shop with Purpose for EDNF

IF you could donate a percentage o everyonline 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

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22/24

AUTUMN 2012PAGE 22

AN overgrowth o bacteria in the gut has

been denitively linked to Irritable Bowelsyndrome (IBS) in the results o a new Cedars-

Sinai study which used cultures rom the small

intestine. This is the rst study to use this gold

standard method o connecting bacteria to the

cause o the disease that aects 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 o bacterialermentation in the gut. This study was the

rst to make the link using bacterial cultures.

The study, in the current issue oDigestive

Diseases and Sciences, examined samples o

patients small bowel cultures to conrm

the presence o small intestinal bacterial

overgrowth or SIBO in more than 320

subjects. In patients with IBS, more than a

third also were diagnosed with small intestinebacterial overgrowth, compared to ewer than

ten percent o those without the disorder.

O those with diarrhea-predominant IBS, 60

percent also had bacterial overgrowth.

While we ound compelling evidence in the

past that bacterial overgrowth is a contributing

cause o IBS, making this link through bacterial

cultures is the gold standard o diagnosis, said

Mark Pimentel, MD, director o the Cedars-Sinai GI Motility Program and an author o the

study. This clear evidence o 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

successul treatment or IBS.

IBS is the most common gastrointestinal

disorder in the U.S., aecting an estimated 30

million people. Patients with this condition

suer symptoms that can include painul

bloating, constipation, diarrhea or an

alternating pattern o both. Many patients try

to avoid social interactions because they are

embarrassed by their symptoms. Pimentel has

led clinical trials that have shown riaximin, atargeted antibiotic absorbed only in the gut, is

an eective treatment or patients with IBS.

In the past, treatments or IBS have always

ocused 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 riaximin

experience relie o their symptoms even aterthey 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 o IBS.

The study is a collaboration with researchers

at Sismanogleion General Hospital in Athens,

Greece, and at the University of Athens; this isa 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


23/24

AUTUMN 2012PAGE 23

Te Mgzie About Livig Wih EDS

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Copyright 2012 Ehlers-Danlos National Foundation. The opinions expressed inLoose Connections are those o the contributors,authors, or advertisers, and do not necessarily refect the views o Ehlers-Danlos National Foundation, Inc., the editorial sta,Proessional Advisory Network, or the Board o Directors. EDNF does not endorse any products.

Professional Advisory NetworkPatrick Agnew, DPMPeter Byers, MDEdith Cheng, MDHeidi Collins, MD

Joseph Coselli, MD, FACCJoseph Ernest III, MDClair Francomano, MDTamison Jewett, MD

Mark Lavallee, MDHoward Levy, MD, PhDNazli McDonnell, MD, PhDDianna Milewicz, MD, PhDAnna Mitchell, MD, PhDJohn Mitakides, DDS, FAACPRaman Mitra, MD, PhDLinda Neumann-Potash, RN, MNTerry Olson, PTMary F. Otterson, MD, MSMelanie Pepin, MS, CSGAlan Pocinki, MD, FACPElizabeth Russell, MDUlrike Schwarze, MDKaren Sparrow, PhDBrad Tinkle, MD, PhDMike Yergler, MD

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AUTUMN 2012PAGE 24

Editor/Graphics & Type

Mark C. Martino

Editor, Medical Section

Amy Bianco

Copy EditorElise Makhoul

Front Cover

3D Conceptual Render, Mark C. Martino

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Copyright Mayang Murni Adnin, 2005

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