L O O S E CONNECTIONS

Your Magazine About Living With EDS Winter 2012

EDNF 2013 Learning Conference Announcement ................................................................................ 2

A Unique Way Caleb Habron ............................................................................................................ 5

A Mother’s Story Kyara Micali Bergstrom .......................................................................................... 6

Steroid Injection Linked with Significant Bone Loss ............................................................................. 7

Art & Poetry Shelly Menville Marlow ............................................................................................... 8

Pregnancy and EDS Links ................................................................................................................... 9

Poetry Leah Alfonsi ......................................................................................................................... 11

Art Holly Morningstar .................................................................................................................... 12

Athletics and Ehlers-Danlos Syndrome: An Interview with Dr. Mark Lavallee Amy Bianco ................ 13

Patient Education: Filling Your Toolbox Maggie Buckley .................................................................. 15

EDNF Thanks Our 2012 Donors ...................................................................................................... 16

Publisher's Index ............................................................................................................................ 22

WINTER 2012PAGE 2

EDNF’S 2013 Learning Conference will be headquartered at The Westin Providence

in Providence, Rhode Island, August 1-3. The Westin Providence Hotel at One West Exchange Street features a connection to the Providence Place Mall; the hotel is within walking distance of many activities and attractions. Conference events will be held in the Rhode Island Convention Center at One Sabin Street, Providence, Rhode Island 02903. There is an enclosed walkway between The Westin Providence and the Convention Center.

A block of rooms will be made available for EDNF at special rates, and information will be posted online as soon as it is available.

Click here for more information on travel by air and train.

Click here for information about things to do in Providence.

About Providence

Providence is the capital of and the most populous city in the state of Rhode Island, and was one of the first cities established in the United States. It is the third largest city in the New England region, situated at the mouth of the Providence River.

Providence has a nearly four hundred-year history integral to that of the USA, including the first bloodshed of the American Revolution. The area which is now Providence was first settled in June 1636 by prominent Puritan Roger Williams and other religious exiles. It was one of the original Thirteen Colonies of the United States. Williams had been exiled from the Massachusetts Bay Colony for his outspoken beliefs concerning distinction of state government and religion: “All civil states, with their officers of justice, in their respective constitutions and administrations, are proved essentially civil, and therefore not judges, governors, or defenders of the spiritual, or Christian, state and worship.”

Williams secured a title from the Narragansett natives around this time, and he named the area in honor of “God’s merciful Providence,” which he believed was responsible for revealing such a haven for him and his followers to settle. Williams also cultivated Providence Plantations as a refuge for persecuted religious

2013 Learning ConferenceRhode Island Convention Center/�e Westin ProvidenceProvidence, Rhode Island § August 1-3

WINTER 2012PAGE 3

dissenters, as he himself had been exiled from Massachusetts. Baptist minister Chad Brown was a leading 17th century land owner in Providence and ancestor to the prominent Brown family and Nicholas Brown, Jr., for whom Brown University was later named. Providence Plantations was an agricultural and fishing community, though its lands were difficult to farm, and its borders were often disputed with Connecticut and Massachusetts.

In the mid-1770s, the British government levied taxes that impeded Providence’s maritime, fishing, and agricultural industries, the mainstay of the city’s economy. One example was the Sugar Act, which impacted Providence’s distilleries and its trade in rum and slaves. These taxes caused Providence to join the other colonies in renouncing allegiance to the British Crown. In response to enforcement of unpopular trade laws, Providence residents spilled the first blood of the American Revolution in the notorious Gaspée Affair of 1772.

Though during the Revolutionary War the city escaped enemy occupation, the capture of nearby Newport disrupted industry and kept the population on alert. Troops were quartered for various campaigns, and Brown University’s University Hall was used as a barracks and military hospital.

Following the war, the economy shifted from maritime endeavors to manufacturing, particularly machinery, tools, silverware, jewelry and textiles. At one time, Providence boasted some of the largest manufacturing plants in the country, attracting many immigrants from Ireland, Germany, Sweden, England, Italy, Portugal, Cape Verde, and French Canada.

During the Civil War, local politics split over slavery, as many had ties to Southern cotton. Despite ambivalence concerning the war, the number of military volunteers routinely

Providence in 1858.

The original homesteads.

Burrows block.

WINTER 2012PAGE 4

exceeded quota, and the city’s manufacturing proved invaluable to the Union.

Postwar, horsecar lines covering the city enabled its growth and Providence thrived with waves of immigrants and land annexations. The city began to see a decline by the mid-1920s as industries, notably textiles, shut down. The Great Depression hit the city hard, and Providence’s downtown was flooded by the New England Hurricane of 1938 soon after. The city saw further decline; from the 1950s to the 1980s, Providence was a notorious bastion of organized crime, and the legendary mafia boss Raymond Patriarca ruled a vast criminal enterprise from the city for over three decades.

The city’s renaissance began in the 1970s. In the 1990s, Mayor Vincent Cianci, Jr., showcased the city’s strength in arts and pushed for further revitalization, ultimately resulting in the opening up of the city’s natural rivers (which had been paved over), relocation of a large section of railroad underground, creation of Waterplace Park and river walks along the river’s banks, and construction of the Bank of America Skating Rink and Providence Place Mall.

WINTER 2012PAGE 5

I HAVE no remorse. If I’m too lazy to walk around a store, I’ll use a wheelchair and seem

as though I’m too weak to even move my big toe. And then I like to just spontaneously leap out of the chair and run around like it’s no big deal. I love the look on elderly peoples’ faces when they see me rolling around in the chair, like they can relate to me, like I have brittle bones or something. I wouldn’t be surprised if one day somebody came up to me and handed me a cup of Boniva. Granted, I probably do have brittle bones. And it is necessary to use a wheelchair on certain occasions. But not because I’m old. Because I have EDS.

I’m still not sure though what EDS entails, exactly. Doctors aren’t even completely sure yet! The cherry on top of an emergency room visit is when the doctors look up your ailments on Google. Or when people read your medical files and just go, “Dang! What is all this stuff?” Whatever. At least I’m special. EDS is a part of my identity now, it’s part of my schtick. I can’t even imagine my life without EDS, I’ve gotten so used to it! Plus — it intrigues people — it’s pretty good conversation. They’ll think of you differently, put more significance in your name than normal.

A UNIQUE WAY

People tend to see me as one of those inspiring, adorable, bed-ridden children who say uplifting things and get their own segment on Good Morning America. So, I’m going to take advantage of it! I’m going to soak up every ounce of attention I get, and make use out of it. After all, who are healthy people to tell us not to make the best of a negative situation? You have no idea how much of a difference positive thinking can make if you haven’t tried it. I mean, I’m just glad that I don’t have to use a wheelchair all the time. That I even have the option of walking! That I don’t dislocate as easily as other fellow EDSers. That I’m just healthy enough to tackle the world, and hopefully raise awareness for people who are unable to.

When God closes a door, he opens a window…and if He doesn’t, I’ll take my wheelchair and break the window down myself.

Caleb HabronMelissa Habron: “Caleb is 15 years old. He was diagnosed with EDS when he was nine after a long road of illnesses and problems. He was diagnosed at VCU in Richmond, Virginia, and then sent to Howard Levy at Hopkins for a second opinion. Caleb has been homebound from public school since he was in fourth grade. It was impossible to keep him well and safe. He deals in a unique way.”

TED Talk, Louie Schwartzberg: “Nature. Beauty. Gratitude.““You think this is just another day in your life. It's not just another day. It's the one day that was given to you. Today. It's given to you. It's a gift. It's the only gift you have right now. And the only appropriate response is gratefulness.”Brother David Steindl-Rast, Ordo Sancti Benedicti http://www.ted.com/talks/louie_schwartzberg_

nature_beauty_gratitude.html

WINTER 2012PAGE 6

MY daughter, Isabella — Izzy— is six years old. She has a diagnosis of Vascular EDS.

She also has asthma and an immune deficiency for which she requires four weekly infusions of immunoglobins. In the last year it has become increasing difficult to draw blood or place an IV line. As soon as the tourniquet would be placed, her arm would swell and she would become so itchy she would become hysterical and start scratching, not caring that there was a needle in place. Blood draws were difficult as the vein would give droplets of blood; even three millilitres were difficult to draw.

Recently not even the head nurse could not find a vein; after nine attempts, the doctor said to drip her foot. This was traumatic for Izzy and since then, for the first time in her six little years, she has been afraid of nurses and needles. They suggested a port for her.

I was uncomfortable with this, but I could not allow the trauma to continue. I told Izzy we needed to hear yes from four people: her pediatrician, her cardiologist, her rheumatologist, and the surgeon.

Her pediatrician was happy about it, as Izzy required infusions to fight her infections. Her cardiologist did a sonar, and said the vein was nice and healthy.

Her rheumatologist at first was not happy; she said it was very risky to place a port in a child with EDS, but I explained what was happening and how traumatizing it was becoming for Isabella. I will never forget the examination. She held Izzy’s right arm, turned to me, and said, “It is now impossible to drip this child.” She explained the supportive tissue was no

A MOTHER’S STORY

longer there and the veins had sunk: Isabella would have to have the port.

After receiving the final yes, from the surgeon, Isabella went in for her surgery on September 25, 2012. She was scared and all I wanted to do was take her home, but even in her sedated state she was telling me how much she wanted the port. I explained to the anesthetist about the veins; he was very sure of himself, saying he was trained to find the hardest veins. However, after the surgery he told me he had pricked her many times, and ended up in the foot because her veins were so difficult to find.

Isabella took over an hour to wake in recovery, the longest hour of my life. She screamed when she saw the drip was in her foot but calmed down as soon as they removed it.

So now we had this port, and I was so nervous! If we lost the port, how would she get her infusions? I needed to be trained to use it, because fewer hands meant less chance of infection. The first attempt, she started crying

WINTER 2012PAGE 7

she was scared and wanted to lean on me, so I went into “mommy mode” and let her while the capapble nurse did the connecting.

The first infusion went very well. Izzy enjoyed having two hands, for simple things like being able to eat, color, and go to the bathroom. When it came to removing the infusion I was petrified. There was no nurse available trained to help me, but I had my friend with me, whose own little girl has a port. She guided me on how to flush and remove it. It was a surreal moment as I looked into my little girl’s eyes, which were

filled with so much trust and calmness. I never thought I could do it, but Isabella knew I could.

I worry a lot about the port. Yes, maybe I am a bit overprotective, but we cannot lose this vein: too much depends on it.

Kyara Micali BergstromKyara lives in Johannesberg, Gauteng, South Africa. She leads “The Super B Foundation EDS Support Group” which can be found on Facebook.

POSTMENOPAUSAL women suffered significant bone density loss in their hip

after they were treated with an epidural steroid injection for back pain relief, according to a Henry Ford Hospital study. Bone density loss after six months was six times greater when compared to the typical bone density loss seen in a year in a postmenopausal woman who doesn’t receive steroid injection, researchers say.

Shlomo Mandel, MD, a Henry Ford orthopedic physician and the study’s lead author, says physicians should exercise caution prescribing an epidural steroid for select patients, suggesting that multiple injections may compromise bone strength.

“The findings of our study suggest that epidural steroid injections for back pain relief should be approached cautiously in patients at risk for bone fragility,” Dr. Mandel said. “Physicians who do prescribe them should consider measures that optimize bone health such as calcium and vitamin D supplements and exercise as part of their patient’s treatment plan.”

The study was published in the December 1 edition of Spine. Back pain is one of the most common medical conditions in the United States, affecting eight out of ten people at some

Steroid Injection Linked with Significant Bone Losspoint during their lives. As people age, their spine ages with them, causing degenerative changes in the spine. Patients are typically treated with anti-inflammatory drugs and physical therapy. If symptoms persist, an epidural steroid is often prescribed to alleviate pain and improve function. However, steroid use has been linked to diminished bone quality.

In the observational study, researchers at Henry Ford sought to evaluate whether steroid injections used for treating lumbar stenosis increased the risk of bone loss in postmenopausal women. Lumbar stenosis is an abnormal narrowing of the spinal canal. Twenty-eight patients, aged 65 and older and treated between 2007-2010, were evaluated for bone loss using bone density testing and serum biochemical markers prior to receiving an injection, then at three- and six-month intervals. The bone loss data was compared to bone loss data for postmenopausal women who hadn’t been treated with an epidural injection.

“Patients receiving multiple steroid injections with a history of steroid exposure may be especially susceptible to compromised bone strength,” Dr. Mandel said.

Press release; the study was funded by Henry Ford Hospital.

WINTER 2012PAGE 8

ART & POETRY SHELLY MENVILLE MARLOWA Mother’s Tears — He Was Real.

Fifty pills in a week didn’t ease my pain;What on this earth makes you think you can?It’s like you can’t see, a retarded veil,Blind this is real, blind to my Hell.

You never held him in your arms,You can’t possibly feel how deep we’re scarred.

I know what I said, I know I should be charged.Be careful what you wish for, God hears all.When I said I didn’t want him that first scared

month,I said I wasn’t ready, life would change too much.

I swear I didn’t mean it, God let me take it back!Please, I didn’t mean it! I just want our baby back!

Eternally sleeping, father’s hands with my face.You have humbled me, Lord, I’ve been put in

my place.There’s a hole in our hearts we will never escape,Like a scream in the night from which you

just can’t awake.

My soul is so heavy, ready to break.How much more am I expected to take?

Don’t want to hear of great plans or how some things have reason.

If this was part of God’s Plan, take me in for treason.

If life is a destination and this is part of the journey,

I’ll wreck this damned ship, walk away, and just burn it.

Because you never held him, got to see him laugh or play

Doesn’t mean he never happened, doesn’t make this go away.

“Miscarry Me, Lord”

Flowers bring me fleeting smiles. Cards and calls bring me small comfort.

I am thankful to all who show us love but I wish our pains would all go numb.

We know this will not go away, forever in our hearts to stay.

I held him in my arms that day. I knew him when I said his name.

That you didn’t know him doesn’t change the way we feel,

I held him in my arms that day. We loved him. He was real.

WINTER 2012PAGE 9

Normal, I Think.

Normal, I think, would be good;Or at least acting as I should.

Head held high and shoulders back,Moving forward, full frontal attack.

No time for mourning, I have to move on,Forward I’m marching with bloody new scars.

Chemically induced grin on my face:Can strong pills stop tears produced from

heartaches?

Physical damage, I still shake, my teeth chatter.There’s a name for everything ailing the matter.

Initials for syndromes, flashbacks, and strains,Trying to tell me I’m not quite insane.

I just need to hear that it will all be okay, Why won’t someone just tell me this all goes

away?

Dissociated state? Where else would I go?I’m open to suggestions, but nobody knows.

One in four, one in ten, I’m just another statistic,

All this analysis is outright sadistic.

It’s funny that there’s a label for time,That your heart can fall out, and you still don’t

die.

I have to keep moving, aggravated conditionBrings up past painful scars of times I won’t

mention.

Add this to my burden, add this to my load;You won’t have to ask yourself why I explode.

Get back to center, find normal, act fine,But some things you can’t fix with money or

time.

Go through the motions, breathe in and breathe out,

The sun will keep rising despite my shouts.

I pray for mercy and patience. Please pray for my strength.

I need to find normal. It’s good there…

I think.

Classic Type: http://www.ncbi.nlm.nih.gov/books/NBK1244/

Tissue fragility. Manifestations of generalized tissue extensibility and fragility are observed in multiple organs: Cervical insufficiency during pregnancy….

Pregnancy in a woman with classic EDS bears risk for the newborn as well as for the mother. As a whole, these complications are more frequent than in the normal population; however, it is difficult to quantitate the incidence of each complication in affected individuals because

no good studies exist:

• Premature rupture of the membranes and prematurity can occur when the mother is affected, and also when the fetus is affected, especially in the most severe forms.

• Because of hypotonia, breech presenta-tion is more frequent if the baby is affected and may lead to dislocation of the hips or shoulder of the newborn.

• In affected women, tearing of the perineal

Pregnancy and EDS Links

WINTER 2012PAGE 10

skin by forceps and, after delivery, exten-sion of episiotomy incisions and prolapse of the uterus and/or bladder may occur.

Because of the increased risk of skin lacerations, postpartum hemorrhages, and prolapse of the uterus and/or bladder, monitoring of women throughout pregnancy and in the postpartum period is recommended.

Ascorbic acid (vitamin C) may reduce easy bruising (see Prevention of Primary Manifestations). In general, a dose of two grams per day is recommended for adults; however, no strict guidelines exist regarding recommended dose during the third trimester of pregnancy.

Monitoring of pregnant women for preterm labor is warranted during the third trimester when the risk of premature rupture of the membranes is increased.

Hypermobile Type: http://www.ncbi.nlm.nih.gov/books/NBK1279/

Pregnancy may be complicated by premature rupture of membranes or rapid labor and delivery (less than four hours), but this is less likely than in the classic type. Joint laxity and pain typically increase throughout gestation, especially in the third trimester, as normally occurs during pregnancy in unaffected women. No other complications are associated with pregnancy [Volkov N, Nisenblat V, Ohel G, Gonen R. “Ehlers-Danlos syndrome: insights on obstetric aspects.” Obstet Gynecol Surv. 2007;62:51–7].

Vascular Type: http://www.ncbi.nlm.nih.gov/books/NBK1494/

Pregnant women should be followed in a high-risk obstetric program.

Pregnancy for women with EDS type IV has as

much as a 12% risk for death from peripartum arterial rupture or uterine rupture [Pepin M, Schwarze U, Superti-Furga A, Byers PH. “Clinical and genetic features of Ehlers-Danlos syndrome type IV, the vascular type.” N Engl J Med. 2000;342:673–80].

It is prudent to follow pregnant women with EDS type IV in a high-risk obstetrical program.

It is not known if elective caesarian section decreases the risk of mortality and vaginal and cervical tears and these benefits outweigh the associated morbidity.

Dr. Joseph Ernest, Ehlers-Danlos Syndrome and Pregnancy 2011 (available here)

Does pregnancy pose any risk to the Classical Type? http://www.ednf.org/index.php?option=com_content&task=view&id=1552&Itemid=88889064

What are some of the Ob/Gyn issues in Ehlers-Danlos Syndrome? http://www.ednf.org/index.php?option=com_content&task=view&id=1534&Itemid=88889064

Obstetric and Gynecologic Dysfunction in EDS http://www.ednf.org/index.php?option=com_content&task=view&id=1493&Itemid=88889208

EDS Type III and Pregnancy: A Case Report http://www.ednf.org/index.php?option=com_content&task=view&id=1333&Itemid=88889208

Obstetrics & Gynecology Articles http://www.ednf.org/index.php?option=com_content&task=view&id=1184&Itemid=88889265

On http://bit.ly/KZQN6N:

Anna Mitchell, MD, PhD, Research topics—pregnancy survey results

Ron Jaekle, MD, Pregnancy in EDS

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Don’t Cause Me to Break

It causes angst the likes of whichSo few can understandAnd takes away the goals and dreamsThat through youth I'd always planned.Causing pain at every footstepAnd in every breath I takeBurning anger, frustration, regretAs I pay for the choices I make.The normal life seems impossibleBut still I try each dayJust to rise from bed can be agonyIt just shouldn't be this way.There are those who try to helpAnd many that seem to careBut sometimes, because I hurt so much,I wish they weren't even there.Pain can be viewed as invisibleSo how can I begin to describeWhy I can't do things like most canWhy this seems to ruin my life?Depression can be commonIf I lose sight of what really countsAnd I spend much of my time aloneBecause of the pain that it amounts.There is so much that goes onThat not one can really knowThoughts inside, feelings of the heart,Other things that are harder to show.Silence around others is commonIt's just from all I feel and seeMy friends all around me have freedom.The likes of which I can't even dreamHow can I live a normal lifeWhen I fear the steps I must take?When I fear that working and living this lifeWill very soon cause me to break

POETRY LEAH ALFONSI

Smaller Blessings

A smile from a child, a hug from a friendThe sweet times with family that you wish

could never endThe rain from a storm cloud and the drops

that remainSome of life's smaller blessings I could see over

and over again.The reflection in a horse's eye, the piercing cry

of a hawkThe rainbow that paints the sky, the jagged

crystals in a rockThe sound of horses' thundering hooves and

the sight of a tiny frogThe vivid colors on a lizard's scales and the

knots that complete a logA smile from him meant just for you and the

ocean's salty breezeThe veins in the petal of a rose and drops of

water as they freezeThe whispers of a coming wind and the quiet

beauty of a lakeThe sight of a sleeping child that you cannot

bear to wakeThe sound of children’s laughter reaching to

the skyAnd all the things we see from Him without

needing to ask why.

WINTER 2012PAGE 12

ART HOLLY MORNINGSTAR

“Believe It”

“Pray”

http://www.archaicsmiles.com/

WINTER 2012PAGE 13

AS our children make their way through the school year, learning new sports and

encountering new demands on their bendy bodies, it is important that they understand their limitations and also experience the well-being that physical activity brings. It is a tricky balance. Sports medicine specialist and EDNF Professional Advisory Network member Mark Lavallee, MD, CSCS, FACSM, has been exploring this balance in his research and practice for the past 15 years. He has served as the medical director and team physician for numerous Olympic trials and international games — most recently the 2012 IWF World Masters Weightlifting Championships in Lviv, Ukraine, and the 2011 Pan-Am Games in Guadalhara, Mexico — as well as for various local high school and college sports teams. In his teaching practice at Memorial Sports Medicine Institute in South Bend, Indiana, Dr. Lavallee estimates that he has seen as many as 2000 athletes with EDS, most likely the largest such database in the world.

Dr. Lavallee believes that with careful management, most young people with EDS can and should lead active lives. EDS is confusing, and painful, and tiring; and it is tempting to believe that we must hold back from activity to protect ourselves. And indeed, there was a time when it seemed that the EDS body was too fragile to participate in sports. As a boy, Mark was diagnosed with classical type EDS in 1973 in Syracuse, New York, by his astute pediatrician. Later, he was told by none other than the pioneering medical geneticist Dr. Victor McKusick at Johns Hopkins University that he should take it easy, engage in no sports or athletic activity. But as the years piled on, so did the pounds; Mark became overweight and miserable, and he decided to try a different course. While at Penn State, he made friends

ATHLETICS AND EHLERS-DANLOS SYNDROME: AN INTERVIEW WITH DR. MARK LAVALLEE

with a body-builder named Bret Sobota. Bret would later enter medical school, too, and become an accomplished ENT surgeon. Bret trained Mark, and together they eventually started East Halls Gym, an on-campus gym. It took a lot of patience and care to coax his EDS body into doing things no one thought it could do, but the effort paid off. Mark lost weight, gained strength, and improved his lean body mass. His self-confidence also grew, and he was inspired to devote his career to helping others safely experience the joys and benefits of physical fitness.

The CDC estimates that more than 30% of children and just less than half of American adults are obese and thus at risk for heart disease, stroke, type 2 diabetes, certain types of cancer, and other preventable causes of death. People with EDS are not exempt from this epidemic. For most of us it is more important to accept some risk to our joints and be active for as long as we can than to languish. Physicians and researchers have gotten much better in recent years in differentiating among our many vulnerabilities and managing some of them well enough to keep us on our feet and in the gym.

I spoke with Dr. Lavallee to get specific advice that parents and young people with EDS can use to navigate the world of sports:

AB: Do you think young people with EDS should engage in sports or athletic activity?

ML: Yes, definitely. It is far better for young people to be active than to become deconditioned and possibly overweight, which in the long run will only exacerbate their EDS symptoms anyway. Move it or lose it.

WINTER 2012PAGE 14

AB: What restrictions do you put on your EDS athletes?

ML: With all my athletes in combative or collision sports, I first recommend that they perform an on-line neurocognitive test, such as Axon Sports, to establish a neurocognitive baseline. This gives me a starting point to work from if they should suffer a concussion. Thus I can make sure they are fully recovered before returning to play. With those with EDS, I will also order an echocardiogram and aortic ultrasound to look for hypertrophic cardiomyopathy, which in rare cases can cause sudden cardiac death in young athletes. I also look for mitral valve prolapse, aortic dilation, and incipient aneurism. I advise those with aneurism or aortic dilation to avoid heavy strength training and other activities that involve breath-holding, which could raise their intra-abdominal pressure and blood pressure. I also look for Chiari malformation of the brainstem; and certainly in cases of type II Chiari, I advise my patients to avoid sports involving potential cranial trauma such as football or soccer. Classical types and those with documented dislocations need to be careful with all contact sports.

AB: Are there game changing injuries that would prompt you to advise a young person with EDS to switch to a different sport?

ML: Yes, some of the most common sports-related injuries I see are shoulder dislocations in swimmers and wrestlers and patella dislocations in runners. These are likely to be recurrent with EDS, so it is a good idea to switch to a different sport when they appear. Long-distance running is especially difficult for an athlete with EDS to

maintain, as the constant pounding it involves will degenerate the cartilage in wobbly knees, ankles, and hips, resulting in chronic pain.

AB: What about dance?

ML: For the most part, dance can be very beneficial for people with EDS. They’re good at it, for one thing, which is encouraging, and it promotes better proprioception. Those with EDS should be careful with ballet, however, where there is often pressure to go en pointe too young, which can lead to lifelong foot problems. Ballet is also hard on the hips.

AB: What do you tell a young athlete with EDS who is struggling in his or her chosen sport?

ML: I ask them, What is your goal? With their natural grace and flexibility, kids with EDS tend to get recruited into very challenging sports like gymnastics, figure skating, wrestling, and swimming. But there is a fine line

between achieving a competitive edge and setting yourself up for injuries. Girls especially will often begin to break down physically in their late teens and early twenties if they are too competitive. This may be related to the increasing levels of estrogen during the adolescent phase of growth. They need to know their limits. Ballet is a good example. A young woman with EDS has a 2% chance of making it to the highest level of performance in ballet. So I ask the young dancer, Do you want to try to be a prima ballerina and possibly fail? Or do you want to enjoy dancing, stay fit, and possibly be a dance instructor someday? That would be a realistic goal. There are many things those with EDS can do to stay fit as they age, such as non-competitive swimming, pilates or yoga,

“It is far better to

be active than to

become deconditioned.

Move it or lose it.

WINTER 2012PAGE 15

mild strength training, and working out on the elliptical. Whatever you choose to do, the trick is not to overdo it. Intense competition in certain sports seems to lead to chronic injuries at an earlier age in athletes with EDS compared to those without EDS!

AB: Are there any sports you recommend people with EDS just stay away from altogether?

ML: Yes, I would say stay away from boxing and extreme sports like bungee jumping, Mixed Martial Arts, extreme skateboarding, and parachuting. Trampolines are not the friend of

I LIVE with Ehlers-Danlos syndrome (EDS). As a child, I relied on adults to speak for me

to access medical care. Health care providers did not believe me when I said I hurt because I didn’t have the words or knowledge to adequately describe the pain. As I grew older, it became clear that I needed to learn anatomy, medical jargon, and much more to advocate for myself.

Sadness, anger, calm…emotions alone don’t make the point that EDS causes pain. Just saying, “I’m in pain,” is not enough. To fully understand, health care providers need to know where it hurts, how long it lasts, what causes pain to flare, and how the pain feels (burning, aching, heavy). Advocating for me means saying, “Moving my body feels like I’m walking through a tropical storm on a listing ship with bags of pebbles strapped to my feet while wearing a jacket hooked with a thousand dangling hammers. I am battered and aching all over.” That is the language it takes for others to understand.

Working with health care providers respectfully and communicating clearly has helped me fill my pain management toolbox with treatment options and coping techniques, including

Patient Education: Filling Your Toolboxexercise, sleep hygiene, nutrition, massage, meditation, distraction, acupuncture, and prescription pain medications. Combining these tools provides the most powerful pain relief, because each one chips away at the pain a little bit.

Your first tool in advocating for yourself is communication. You are the expert on your unique body. Always be respectful and clear in your descriptions, expectations, and requests for treatment. Keep a pain journal to help you gather information to share: where it hurts, when it hurts and what makes it feel better. Chronic (persistent) pain is a multi-faceted condition that requires a multimodal approach. Use a pain scale and define what each level means to you. Be patient as you try different treatments on your journey to identify which combination of options work for you. Eventually, your toolbox will be filled with various pain management tools, too.

Maggie BuckleyFrom a September 2012 independent supplement by Mediaplanet to USA Today.

EDS. Neither are certain activities involving horses or dirt bikes, unfortunately. Rodeo is obviously a bad idea, but any horseback riding or dirt bike riding carries a risk of freak accident that I think is just too high. Look what happened to Christopher Reeve, and he didn’t have EDS. And if a kid can be steered away from football or hockey to a less violent sport, that’s a good idea.

Amy BiancoMedical News Editor

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EHLERS-DANLOS NATIONAL FOUNDATION GRATEFULLY ACKNOWLEDGES THE INVALUABLE SUPPORT OF OUR DONORS IN 2012.

AG Products CompanyDiane AhrenkielKaren AltabefLori AltmanDavid ArmstrongAshleyAT&T United Way/Employee Giving Campaign

Sara BaasStephen C. Badenoch

In honor of Norman BishopWhitney BarnhartR. C. Baron

In honor of Norman BishopBennye Irving BarrettDavid L. BelewKara Moorhouse BellMarvin Bellin, MDMarvin L. BellinJackie BensonGail & Frank BermanEric BeroffJohn S. Bertone

In honor of Samantha's birthdayChristina BickfordPatrick BlackDiane BlackmanBrian Weston BlamiresThe Blanchard FoundationJeffrey Michael BlilieSally BlissPriscilla BoberCandyce BollingerKathleen BonnesSue BouckCarrie BourgoRobert Brantman

Bristol-Myers SquibbOn behalf of Cynthia Lauren

Delbert BrownMarlene Rachel BrownellTreva Brunson James D. Buckley

In honor of Maggie BuckleyMaggie Buckley

In honor of Angel DenardiChristiane Michele Burnison-HaussKaylene ButlerAimee Buzzard

Joy Elena CaesarSalina May CarawayCarol Gill Associates, LLC

Nikki Metzger Fire & Ice Skate-a-ThonAdrienne CarruthersRob A. CasaleSusan CasperLillie Mac CastevensEliot ChackSandra Aiken ChackJennifer Brooke ChaoFrederick ChapeyJudy ClydeSylvia CohenCarole ColemanMargaret E. ColelmanBeth ComiskyCommunity Foundation For Southeast MichiganSusan ConnorJennifer M. ConnorsPamela CookSheri CooperJack Charles CornwellJonathan CortezAlan Crosswell Abi CunninghamMark R. Czichotzki

WINTER 2012PAGE 17

EHLERS-DANLOS NATIONAL FOUNDATION GRATEFULLY ACKNOWLEDGES THE INVALUABLE SUPPORT OF OUR DONORS IN 2012.

Barbara G. DalrympleIn honor of Alex Skelka

Dolores DansynMelissa DappenInga DawsonShweta Dhar, MD, PhDLynne D’HuyvetterSherry DinapoliDiana DiRoccoDiane DoletzkyGregory DowTisha DoweSherry DowneyJerry Drossos

EDS Sabal FoundationSara EllertonMarie E. Engelson

Kathryn FalluccoVincent & Tina FalsittaFarmers Bank and Trust Company

In honor of Levi OliverDavid FeherSteven FerruggiaMike FinkelsteinDenise FischerDonna G. Frey

In honor of Norman BishopChris FridenAndrea Friedman

Marco GarciaEdward GardenPatricia Gargiulo

In honor of Frank CastellanoPeter GargiuloPatsy GerckensJudy Lynn Giddy-KingTeresa GilmourMegan GoldenGolden Girls, LLC

In honor of Alex SkelaDiane & Donald GoldfarbAviva GoldsteinJonathan GottliebDonnamarie GrassoMarcy GrayHowie GreenTom Gropp

In honor of Marjorie GlandersCatherine Jean Guida

Jerry HaasHackensack High School Student Association

In memory of Erin GeerlofJohn HackettJohn Hackett

In honor of Meghan HackettAndrea HalpernCynthia HanahanDavid HanslovanNadia HaqueVictoria L. HartmanWayne Heinmiller

In honor of Cheryl HeinmillerMaryAnne HensonMandy HerculesHerschel HibbardLarry Hill

WINTER 2012PAGE 18

EHLERS-DANLOS NATIONAL FOUNDATION GRATEFULLY ACKNOWLEDGES THE INVALUABLE SUPPORT OF OUR DONORS IN 2012.

Sharon HoffRobert HollemanJenna Mame HollowayRichard HooymanMarianne HoppelPaul HorowitzHousing Authority City of Carrollton

In honor of Nancy J. BrownJane Catherine HowardMary Hubins

In honor of Maggie BuckleyJana HugginsNancy Marie Hunter

IBM Employee Services CenteriGive.com Holding LLCDorothy InmanGisele Irola

Marion JablanskyMarc A. Jacobson

In honor of Norman BishopHalina JamnerHoward JamnerJeffrey M. JamnerCraig JampolKathryn JaskolskiToril JelterDebra JohnsonJohnson&Johnson Family of CompaniesAmity Johnson-VetereAndrea Lynn JolleyAmy JonesAna M. Jones-DeweyLara JordanAnoosh JorjorianJoyce Martin JosephJustGive

Kaiser Permanente Community Giving CampaignElise G. KaplanEllen KatzoffPatricia KeethEric KeiterDoris M. Kelley

In honor of Norman BishopSandy B. KernerCarl KesgenKeybank National BankMichelle KigerMichael Kime

In honor of Marjorie GlandersAaron Klap

In memory of Tom YasickChristopher Thomas KonowTracy KoringAndrew KramerWayne KrampelRichard KranerKatherine KrizekLynn M. Kurtz

Terry LaudettGlenn LaverdiereDolores Ann LebaMichael LehewDouglas LevyLisa LewisLiberty Diversified InternationalChristine LowthertPearl LoxtermanLuann LucasPeter Lutz

In honor of Alan & Sharon Youngblood

WINTER 2012PAGE 19

EHLERS-DANLOS NATIONAL FOUNDATION GRATEFULLY ACKNOWLEDGES THE INVALUABLE SUPPORT OF OUR DONORS IN 2012.

Macala Tool Inc.Arthur MagillSusan MaimonRichard MalenfantBetty V. MaloneChristopher MarbachJohn MarcelSusan MarshMark MatsumotoJennifer MattheyAlice McDowellPatricia Long McElroyPhyllis McEvoyBernadette McHughKatherine McKenzie

In honor of Norman BishopTerry O. McKinney

In honor of Levi OliverRichard M. McNeilMedco Employee Giving CampaignKathleen M. MeekerGladys MendoGladys Mendo

In honor of Alex SekelaHillary MesserBarbara MetselaarElizabeth MetzgerElizabeth Metzger

Nikki Metzger Fire & Ice Skate-a-ThonJoanne MichaelsonMicrosoft Matching Gifts ProgramPia Marie MikealJames S. Miller

In honor of Levi OliverJulie A. Miller

In honor of Norman BishopTherese Miller

In honor of Norman BishopRobert MogilNancy MolesworthSonja MolyneuxMichael A. MooreWilliam Moorhead

Kenneth MusickAllison MuthRobin Muth

Dave NadzakNational Fuel Gas Company FoundationGrant NeeleyCalvin NeiderJedd NeroJohn P. Newcome

In honor of Norman J. BishopKristin NewswangerChristi NewtonLinda Neumann-Potash

Elisa O’HernAnthony O’KorenMiquette OrrTim Outlaw

In memory of Whitney Barnhart

Roger PalmerCheryl Palmersheim

In honor of Ryan PalmersheimRandy ParshallRobyn PasternakPaul Hughes Family FoundationDaniel PaulsonMark PawukVincent PennellaMadora Pennington

WINTER 2012PAGE 20

EHLERS-DANLOS NATIONAL FOUNDATION GRATEFULLY ACKNOWLEDGES THE INVALUABLE SUPPORT OF OUR DONORS IN 2012.

Richard PeressBarbara PilvinPlan Benefit Analysts of Tulsa, Inc.Dan PodgorsekPohanka TM Inc.Nancy T. PolomisNancy T. Polomis

In honor of Norman BishopSusan Putt

Amy RandallRatner CompaniesDan & Barbara RegasAlissa ReichVanessa ReichDebra Resnick

In memory of Linda WaxterDavid RestainoLettice RhodesNicholas RidgelyRichard J. RiemenschneiderKrista Risley

In honor of Alex SekelaJunior RobbinsLiliana Roja-GuylerEugenia RoothIrving B. Ross

In memory of Glenn RossJohn RoyeAdam RussinLinda RussinRuth Tupler Revocable Trust

Al SabalSaint Luke Principal AccountLiz SalisburyPatrick SawickSusan Schaefer

Benjamin E. SchlechterSharon SchnepfDuane SchultzKate SchultzAmy SchulzeMary Lee Scott

In honor of Levi OliverWarren R. SedlacekSam ShaulsonShell Oil CompanyMarlene SherrardCatherine ShippFloyd SiegalLinda SimmonsLisa SimmonsRosemary SoldivieroCorinn SparksRachel SpiesDeborah SprecherKathryn StansfieldState Chapter of OpticiansKristina StogsdillCrystal SullivanDonna SullivanSureWest FoundationMelissa SussanMargaret Swanson

In honor of Alex Sekala

Richard M. TaffetJosh TaneCharlotte TannerTrice Hughes, Inc.

In honor of Levi OliverTruistCynthia G. TurseMarie T. Twitchell

In honor of Norman Bishop

WINTER 2012PAGE 21

EHLERS-DANLOS NATIONAL FOUNDATION GRATEFULLY ACKNOWLEDGES THE INVALUABLE SUPPORT OF OUR DONORS IN 2012.

United WayUnited Way of the Bay AreaUnited Way of New York City Designation Acct.United Way of Southeastern PennsylvaniaWendy Urban

Rita ValdesMelissa Jo ValentineVehicle Donation Processing CenterVein Specialists at Royal Palm Square Inc.Curtis Verschoor

In honor of Edward C. Nelson

Laurel A. WalburgIn honor of Norman Bishop

Regina Bush WalterDebra Lynn WatersonRosetta WesterIdell WeydemeyerDanny WhiteheadRoy WidmerMary J. Wilhelm

In honor of Norman BishopJanice R. WilliamsonVivian E. WillisWings Eight Inc.

In memory of Tom YasickMelissa WorkmanWendy Wright

Listings are complete as of November 26, 2012; if anyone was overlooked, please accept our apologies and thanks. Names are set and alphabetized as submitted on our donor forms.

Silver Ring Splint Company

Please visit our website to fi nd out morewww.SilverRingSplint.com

SIRISTM Splints help:

• Protect joints• Reduce pain• Stablize fi ngers to

improve strength

Make d i s loca t ions a th ing o f the pas t

Do your fi ngers dislocate doing everyday activities? Do you drop things or have trouble grasping objects? Don’t let EDS slow you down. Wear splints to stabilize and protect your fi ngers.

Better Splints, Better fi t, Better options

Stablize Thumb

Blockhyperextension Stop little fi nger dislocations

WINTER 2012PAGE 22

The Magazine About Living With EDSPUBLISHED BY

FOUNDERNancy Hanna Rogowski1957–1995

Executive DirectorShane Robinson

Board of DirectorsElliot H. Clark, ChairJudge Richard P. Goldenhersh, Vice ChairRichie Taffet, BS, MPH, SecretaryRichard Malenfant, TreasurerSandra Aiken ChackDeb MakowskiLinda Neumann-Potash, RN, MN, CBNRichard Riemenschneider, Director of OutreachJanine Sabal

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.

GUIDELINES FOR SUBMISSIONS TO LOOSE CONNECTIONS

1. For text documents, use Arial, Helvetica or Times of at least 10 points (preferably 12 to 16) in size, so our editors can easily read your document and prepare it for publication. Attach the text document in either Word (.doc) or Rich Text Format (.rtf) to an email sent to editor@ednf.org or EDSerMark@gmail.com that also tells us how to reach you for more information.

2. For photographs, attach them to an email to editor@ednf.org or EDSerMark@gmail.com; please identify the event or cause for the photographs, including any relevant identification (persons involved, date, photographer’s name if needed) and how to reach you for more information.

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

Copyright 2012 Ehlers-Danlos National Foundation. The opinions expressed in Loose Connections are those of the contributors, authors, or advertisers, and do not necessarily reflect the views of Ehlers-Danlos National Foundation, Inc., the editorial staff, Professional Advisory Network, or the Board of Directors. EDNF does not endorse any products.

Professional Advisory NetworkPatrick Agnew, DPMPeter Byers, MDEdith Cheng, MDHeidi Collins, MDJoseph Coselli, MD, FACCJoseph Ernest III, MDClair Francomano, MDTamison Jewett, MDMark 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

L O O S E CONNECTIONS

WINTER 2012PAGE 23

Editor/Graphics & TypeMark C. Martino

Editor, Medical SectionAmy Bianco

Copy EditorElise Makhoul

Front Cover & Below “Touch of Winter” copyright © 2005 Traveler