The Ehlers-Danlos Blog

Sunday, November 11, 2012

US NEEDS 'REAL' NATIONAL HEALTH CARE, BUT CANADIAN HORROR STORIES KEEP TRUE REFORM AT BAY

TORONTO—For American families struggling to cope with diagnosis and treatment of Ehlers-Danlos, our fragmented health care system can be a nightmare. From primary care physicians who know little about the disease—and even less understanding of how to treat it—to insurance companies who withhold approval for expensive diagnostic tests, specialist appointments, and treatments, the idea of a single-payer national health care system seems idyllic. Yet, every time Americans who are fed up with an increasingly complex, expensive, and often infuriating for-profit, employer-based system, the county-by-county vagaries of Medicaid and other government-sponsored health insurance—or, the financial devastation of being uninsured—Canada or the UK produces a horror story that makes use question the "national health care" model.

For Canadian Erika Crawford, the pain of Ehlers-Danlos was exacerbated by both Chiari Malformation—and a seemingly uncaring Ontario health care bureaucracy, reports the Toronto Sun:

TORONTO - Erika Crawford is a beautiful young woman with big dreams — and a terrible disease. The Brantford teen’s dreams include being able to play soccer.
The nightmare of her illness is that any small physical contact could cause her a catastrophic injury. Erika, 17, has Ehlers–Danlos Syndrome (EDS), an inherited connective tissue disorder that among other things is causing her spine to press on her brain stem and the main artery in her neck.

Brantford Expositor reporter Susan Gamble first broke this story. “I was told there was absolutely no cure or treatment available,” Erika told Gamble.

If she twists her neck too quickly it can cause her to have a stroke or cause damage to her brain stem that could paralyze her. Erika saw scores of doctors before she finally got the devastating diagnosis in April.

EDS can differ in severity from patient to patient. For Erika it could be deadly unless she gets life-saving surgery in the U.S. with a doctor who specializes in EDS. No doctors in this province are experts in the disease. The operation will cost about $60,000. On Thursday the family got the devastating news from heartless OHIP bureaucrats that they’ve turned down her appeal. They won’t pay for her surgery. Erika can’t wait. She’s living in the shadow of imminent death. The surgery is booked for Oct. 9 and the U.S. hospital needs $30,000 on deposit before they can go ahead. It’s disgusting that a government that spent $230 million to cancel two power plants to save the jobs of a couple of Liberal MPPs, that squandered hundreds of millions more on Ornge, won’t spend a nickel to save a child.

Schools and churches are rallying with fundraisers.
While health ministry officials insist the surgery can be done here, those familiar with the complex nature of EDS say that’s just not true. The problem is identifying an Ontario interdisciplinary medical team and neurosurgeon that’s trained to perform the urgent, life-threatening and complex surgery that’s required on a 17-year-old girl, says a spokesman for the charity Improving the Life of Children.

“The family would gladly stay here. This family is facing spending hundreds of thousands of dollars,” said ILC’s Sandy Smeenk. The U.S. doctor has offered to come here to perform the surgery and train doctors in this province. Health Minister Deb Matthews insists the surgery can be performed here and says about 97% of applications for out of country care get approved. She said 35 such surgeries have been performed here. “Given that the application was not accepted, I can tell you that there would be a reason for that and I can tell you that if a child or anyone needs a procedure, no matter how complicated that procedure is, and there’s someone here, or a team here who can do that then, of course, we don’t pay for someone to go out of province when that procedure can be performed in Ontario,” Matthews said.

That’s no comfort to Erika and her family. On top of the stress of dealing with a desperately ill child, her mom, Michelle, is frustrated that they must also fight an uncaring health bureaucracy. She says doctors here aren’t EDS specialists, while 90% of the U.S. doctor’s patients suffer from the condition. “EDS children are totally different,” said Michelle. Erika has complex underlying complications, such as an underlying blood disorder and connective tissue problems.

Shame on this government for letting a child like Erika down. They should hang their heads in shame. If you want help, you can donate to Erika at any CIBC branch using the Transit No. 029528490783.

Luckily for Erika—with classmates and individuals contributing to the cost—the surgery was not only successful, but the experience brought the community together.

Unfortunately, while millions of Americans find themselves in similar circumstances when dealing with countless private insurances companies, Medicare, Medicaid, the Veterans Administration, and many other public insurance plans, stories such as Erika's become the default response to pleas for a single-payer national health care system.

Clearly, Canada—and the UK—need to modernize their national healthcare systems to account for the complexity and expense of 21st century medicine. Concurrently, those of us who advocate for a single-payer system in the US need to be aware of the challenges facing patients under systems in the UK and Canada and to advocate for reforms that would make single payer national health care in the US a model for the world.

WASHINGTON, DC—It's nice of the Washington Times to provide some coverage to the suffering caused by Ehlers-Danlos—and good supportive commentary for caregivers:

Five Considerations for Supporting People with EDS
1. People with EDS may seem preoccupied or withdrawn even when they appear to be healthy. The introspection might result from fearful anticipation about what the future holds, from managing pain, or having to be careful about all their movements. They may be exhausted and recovering from exertion.
2. As do most of us when our activity is limited, people with EDS experience anger. Since EDS is not curable, the anger is something they must learn to manage. The least the rest of us can do is avoid annoying them further by refraining from telling them what they need or how they might cure themselves. Those who live daily with EDS symptoms know what they need and what to avoid. For example, getting out of the house and sitting in a park might seem like a great idea to you, but the effort can exacerbate EDS symptoms and bring your friend to a point of exhaustion. When having a bad day they will know enough to stay home.

3. Nonetheless, those with EDS like being invited to go out with their friends. Even if they are not up to accepting the invitation it is important to feel included. If an activity is one they cannot participate in having an option of going along to watch will be appreciated.

4. People with EDS can look healthy even when fatigued or in pain, and their stamina changes from one minute to the next. Activities enjoyed last week can be impossible this week, and sometimes they must cancel plans at the last minute.

5. No one likes being told how they should feel, or that someone else knows how they feel. That is annoying no matter what your health status, but extra grating when you are ill and hear it frequently. Support and understanding are what is welcome.

CRITICAL CONSIDERATIONS

Unfortunately, the article fails to fully discuss the potential for cardiovascular risks and complications caused by the disorder. To this, we would add the following further warnings:

1. Ehlers-Danlos Syndrome carries a high risk for stroke, aneurysm, hypotension, mitral valve prolapse, and Chiari Malformation. EDS patients should be evaluated and monitored cardiovascular complications on a regular basis. This may include annual abdominal ultrasounds to rule out the potential for abdominal aortic aneurysms. Extreme fatigue may be a sign of hypotension, which can be treated with relatively inexpensive medication.

2. Extreme hypermobility is a blessing and a curse. Young dancers, gymnasts, and others with extreme flexibility should be evaluated for EDS, especially if there is a family history of extreme joint pain, disability, stroke, migraines, and aneurysm. Dance can be helpful therapy to strengthen the musculature of EDS patients, thereby reducing the risk of joint dislocation, however, understanding the underlying reason for hypermobility may also help to avoid injury and cardiovascular complications.

3. If diagnosed with EDS, patients and their families should ensure that all medical professionals that care for them understand their condition. EDS can seriously affect surgical procedures and outcomes. Prepared physicians can adjust for this, if they understand the underlying condition in advance.

Sunday, June 10, 2012

May Was Ehlers-Danlos Awareness Month – Where was the Press? CNN Flubs and EDS Patients Lash Out

New York – Part of the problem for patients seeking treatment for Ehlers-Danlos Syndrome is that few physicians, let alone the general public, are fully aware of what the disease is; fewer still, know how to treat it. So, when a major news outlet such as CNN provides coverage, the Ehlers-Danlos community is sure to find out.

Unfortunately, CNN.com's "What is Ehlers-Danlos Syndrome?" fails to provide a clear, current, comprehensive portrait of the disease and its sufferers. Instead, readers were treated to some ominously black and white photos of a "bendy person" and her "stretchy skin."

Rather than interviewing numerous physicians, patients, and families, CNN Medical Correspondent Elizabeth Cohen relied on one patient, and one physician, Salman Kirmani, MBBS, a pediatric endocrinologist/geneticist, who is cast as "an expert on EDS at the Mayo Clinic," even though we could not find Kirmani listed ANYWHERE as an author of ANY EDS-related research.

While most of the article was the standard discussion outlining the history, the variations, and the rarity of the disease, some of Kirmani's statements, and CNN's interpretation of his statements, sparked the INTENSE ire of Ehlers-Danlos sufferers. YOU BLEW IT, CNN! Please fix it!

For your convenience, we have bracketed our comments inside the CNN blockquote:

Unfortunately, there is no cure, but Kirmani recommends seeking treatment from a team who knows and understands EDS. [Since so few physicians "know and understand EDS, does Kirmani realize that a team is almost impossible to assemble outside of a major, elite teaching hospital.]

“Even though we have no cure, we can certainly manage the complications quite adequately,” he said. [We know of few EDS sufferers who have experienced having their complications managed "adequately," let alone "quite adequately."]

Managing the symptoms often involves physical therapy to strengthen muscles and over-the-counter drugs for pain. [Many EDS patients cannot tolerate standard physical therapy and mobility issues make it difficult to travel to and from multiple weekly appointments. EDS sufferers were not polite in there reaction to "over-the-counter drugs" providing significant relief from chronic pain.]

Patients with EDS may be limited by their fragile skin or bone tissue – Kirmani and his team tell patients to avoid high-risk activities - yet the majority have a normal life expectancy. [Overall, EDS patients may have a near-normal life expectancy. But, patients with the vascular type, often don't make it far beyond 40. Readers were incensed by this lack of understanding and distinction.]

Ultimately, CNN's article does more harm than good in that it perpetuates the misconception that Ehlers-Danlos Syndrome is simply a benign hyper-mobility disorder. Worse, because the article was picked up by countless television news partners, the effect of this disinformation will take a long time to erase.

So, for your reading pleasure, we have re-posted the readers' comment below. Please feel free to post something equally scathing to the article comments section right here. Unfortunately, it may require Facebook to post.

sweeps It's nice to see EDS get coverage on CNN. EDS is a rare syndrome that receives little attention and it's great for CNN to raise awareness.
I understand this is a very simplistic insight into EDS, but I want to point out two misstatements. First, not all types of EDS are autosomal dominant, which means a parent with EDS has a 50% chance of having a child with EDS. Some are autosomal recessive, which requires both parents to carry the mutation for their child to have EDS. Second, severe pain is a hallmark of EDS -Hypermobility Type. The pain is chronic and often disabling and over the counter medication offers minimal to no relief. It is a mistake for the article to imply that EDS is an easily managed syndrome.

May 28, 2012 at 12:22 | Report abuse | Reply

Mark Glicker Quite a fascinating story.

May 28, 2012 at 23:46 | Report abuse |

Jen thanks for clarifying that Sweeps, this is a very simplistic info on EDS and it doesn't explain that Vascular EDS is deadly either. Nice try, CNN but not really that good.....

May 29, 2012 at 09:18 | Report abuse |

sweeps I have EDS, as does my father, brother and daughter. I had 7 surgeries by the time I was 30, all due to EDS. I need three more, one for my hip (which will be a major surgery), one for multiple organ prolapse and a hernia and one for my back, where a vertebrae is too lax to be supportive. I have arthritis in most of my joints, which can limit my ability to so much as hold a pencil. I have had severe bleeding problems after most of my surgeries, and my daughter had such severe bleeding issues after her heart surgery that it collapsed both of her lungs. We both have to be followed by cardiologists because our aortic roots are enlarged (97% and 98% for body size). I have developed allergies to codeine and vicodin, which makes it extremely challenging to treat the pain. Even after having 8 screws in my knee, they were reluctant to prescribe me pain meds stronger than Vicodin. It is only a matter of time before I will no longer be able to work, all due to EDS. Go ahead, tell me how this is a well managed disease. I highly recommend CNN follow up with Dr. Tinkle or Dr F. You need to give the real story. EDS can kill. You can't get more serious than that.

May 29, 2012 at 10:36 | Report abuse |

jeana i am 49 and have EDS vascular my grandmother was 1 of 13 children all died of aortic disection my grandmother and her siter where the only 2 to make it to 70 and 71 they died same year 2 weeks apart they were the last 2 in there family so theres no cure but doctors refuse us pain meds and tell us we are hypocondriacts i am so glad that i have a good dr now one who listens and acts accordingly more neeeds to be shown on medical progames about EDS we with EDS need to get it out there

May 29, 2012 at 15:02 | Report abuse |

Humanpopbead I agree that is great there was some coverage, but the pain was totally minimized. Many of us are unable to woek due to being on narcotics. My brother died of the vascular kind and I researched his symptoms and that of other family members. My parents had the same HMO since 1969 and they were never diagnosed. They told my mother it was because she needed to lose weight.
Ends up it appears both parents had different types of EDS. Everyone thought my mother to be a hypocondriac and I was accused of being a drug seeker, malingering or crazy until i had the genetic team of ths SAME HMO work me up only discover, "hmnn that is what you have. ". I believe many of the high school athletes that die of heart attacks may be undiagnosed as well. I pleas with all parents...if your children are extremely limber take them to a genetist to be sure they do not have vascular issues as well. No such thing as double jointed. If you or your child are doing party tricks, get seen i mediately. I miss my brother so much, I don't wish this chronic pain on anyone.
My brother was a Viet Nam vet with a silver star but no one believed how sick he was until he died!
Also if you have EDS you may also be at risk for blood pressure issues and dystautonomia (Pots).
We are typically treated so poorly by the docs just because they dont know.
We need med schools to teach more about this RARELY DIAGNOSED syndrome.
Inspire is a great support group where the EDS community can compare notes and get emotional support as well.
There are no guarantees for any of us on how long we live, but we certainly should all get to have as many pain free days as possible. EDS is genetic, progressive and incurable. I will never feel better than today, hardly compares to how you presented the illness...but it is a start at awareness, thanks.

May 28, 2012 at 15:48 | Report abuse | Reply

MAC Thank you for sharing your story...

June 4, 2012 at 04:25 | Report abuse |

Lisa My children have EDS and my one son almost died because he had tumors growing in his throat. He had surgery twice (because it grew back again 2 years later). We were at the doctor constantly with all sorts of issues: failure to thrive (despite feeding them well), diarrea, vomiting almost daily, frequent choking episodes, breathing issues. Finally we were referred to a geneticist who said my children have EDS! Each case is very different, you never know how it will present itself with each child or to what severity.

May 28, 2012 at 17:51 | Report abuse | Reply

cherishangel

It is NOT common to easily treat EDS with OTC meds and PT. Unless you are with a PT that knows how to treat EDS and there are VERY FEW in the Country. Even they are limited in what they can do. Often that cause more damage. There are soo many disabling symptoms that go along with what the short simple article describes. The pain is progressive and PT can't fix sublaxations and dislocations of toes, fingers, head bones shifting, ribs, internal injuries, chronic headaches, severe fatigue,, sensitivity and progressive allergies to medications and pain meds to start. This is not a easy to handle Disease as suggested in this story. They are not just freaky party tricks that can be done at will and just need an aspirin afterward. It does damage to the ligaments, and soft tissue that is progressive, Can and often does become debilitating and chronically painful. This article is rather dismissive of the seriousness of EDS.

May 28, 2012 at 18:40 | Report abuse | Reply

william lemay this article though mostly correct is also obserd I was diagnosed with eds at a young age and as you grow it gets more and more painful pt and otc meds stop working and you need real pain meds and dr's help but today's society puts us off as drug abuser's and hypercondriacts... I tell you this Id love to not be on pain meds anymore but I walk with my kids and my hips pop out if I lift heavy objects my shoulds pop out my wrists kill me everyday and I have random tremors that prevent me from driving I am only 37 yrs old so please ammend your story as your treatment is insulting to folks like me

May 28, 2012 at 21:21 | Report abuse | Reply

L.Ash I agree: this article barely skims the surface of Ehlers Danlos Syndrome. I WAS a licensed massage therapist with my own practice until I had a stroke cause by the way EDS affects my spine the worst. I have multiple herniated discs, degenerative disc disease, AND the EDS was causing my cervical spine to move too much. This actually causes it to compress the arteries to my brain- causing mini-strokes. I was at risk for total paralysis or death and had to have my C1,2 fusion (2 screws and a rod drilled into my vertebrae) to help stabilize the situation. Now my neurologist tells me C3-7 are also causing problems and he recommends cutting them in half, taking out wedges and putting in hinge screws into the vertebrae. I'm 48. My hips and knees are also having problems.Yes, I have pain. NO, OTC meds are not always enough. I have Postural Orthostatic Tachycardia Syndrome- (look it up) many EDS patients do too. MANY adults, teens and children are suffering terribly with this! My 2 kids have it. My teen daughter suffers with SEVERE debilitating pain every day of her life. She is unable to go to school full time. She had to drop out of all her sports. The neurosurgeon is recommending decompression and fusion for her CHIARI (brain settling on her spinal cord- kinking it- platybasia (which is bad). He wants to take out part of her skull, and then screw the skull to her top 2 vertebrae. My son used to play soccer, and run track. Now it is all he can do to get through a day of college. I know many families in the FB EDS community who are dealing with MAJOR life threatening situations as a result of EDS. I know of a young woman right now fighting for her life because she has EDS and was in a car accident. MY SISTER DIED from a ruptured aorta in a car accident. I know now that she too, had Ehlers Danlos Syndrome.
There is NOTHING simple about Ehlers Danlos Syndrome. It is UNDER-DIAGNOSED, UNDER-TREATED, AND POORLY UNDERSTOOD by most of the medical community.
We desperately NEED major teaching hospitals to step up and spend more time teaching about this terrible disease and all of its complications. We need MAJOR FUNDING to work at finding a cure.
I am now a volunteer representative at the Center for Ehlers Danlos Syndrome Alliance. We are hosting our first conference this coming fall in Michigan. http:// cedsa.org
PLEASE- help us get more drs to realize the seriousness and the many complications of EDS. Over the counter medications and physical therapy???? This opinion is not at all accurate. Check in with Dr. Brad Tinkle of Cincinnati Childrens Hospital, ask him about all of his EDS patients and what they suffer with. Check in with Dr. Clair Francomano out in Bethesda... They both specifically treat EDS/genetics... they know the level of suffering EDS patients go through.
EDS patients are some of the bravest, toughest, and compassionate people you will ever meet. They look 'normal' on the outside, but inside they are dealing with much pain, GI issues, blood pressure problems, nerve problems, etc...and yet WE GO ON.
If you want to see hundreds of people with EDS- go to YouTube and type in Ehlers Danlos Syndrome . Some of them just show the hypermobility- but there are many of us who are suffering terribly.
If you know someone with hypermobility, chances are you actually know someone who has EDS. They just haven't been diagnosed yet- because the drs haven't been trained to identify it.
CNN- PLEASE. This truly is a situation that needs much more attention. Don't let someone tell you PT and OTC meds are enough. It's not. I am an administrator of the largest EDS community on FB, and administrator in several others. Our members suffer 24/7 and I really hope that you – CNN- will be able to step up and BE PART OF THE SOLUTION to training more drs to adequately treat EDS, and to helping patients get to those drs.
Thank you for trying. I do appreciate it.
Linn Ash, http://cedsa.org

May 28, 2012 at 21:54 | Report abuse | Reply

L.Ash I would also like to add this information: in the FB EDS communities I am a member of- I would guesstimate that 85% are unable to work due to the symptoms that come from EDS and its accompanying conditions. I personally do not know anyone who is unable to work because they are on narcotic pain relief medications. But, having said that- there is such a negative social stigma on people who need narcotics. So, it is possible that some people do not discuss their needing them. There is a conference on pain management going on today. Pain management is a huge problem for the EDS community, because of the fear so many drs have that their patients 'will become addicted'. For many EDS patients- pain medications are the only thing available to help them get out of bed and live life!Believe me, they have tried to 'push past' their pain. they HAVE sucked it up and tried to ignore it. Think of the last time you sprained an ankle, or a wrist. Do you think you could deal with knowing you were going to have that happen all the time to any joint in your body at any given moment? That you were at risk for it EVERY DAY? and that the sprain was going to take months to heal? If you take away the pain medication, and you do not have cures or treatments that work for a horrible disease, THEN YOU HAVE TAKEN AWAY ALL HOPE. EDS people want to live. They want to move. But- their bodies fail them constantly. Every day can bring a new disaster. So- until there is a cure, or a treatment to stop the progression, or effective medications to stop the symptoms, the EDS community needs the medical community to wake up and learn about this condition. The numbers of people dealing with this condition are grossly underestimated.
For our personal family situation- my daughter and I also deal POTS/dysautonomia, another accompanying condition of EDS. Some of the symptoms of POTS- postural orthostatic tachycardia syndrome, are rapid drops in BP, high pulse rates, dizziness, fainting, falling down, fatigue, etc...
Just shaking my head– there are only a few stories shared here so far. There are so many people suffering. I really do hope CNN will step up and do what they can to make a difference in our world.
Linn Ash, Representative
Center for Ehlers Danlos Syndrome Alliance
http://cedsa.org

May 30, 2012 at 09:03 | Report abuse |

Emma I have both Classic and Hypermobile Ehlers-Danlos Syndrome. I feel like this article makes it seem like EDS is easy to manage when the reality is it's not, it can be very debilitating and disabling. Most doctors do not know what this condition is which makes finding a "team of doctors" is extremely challenging and I have yet to find a doctor who truly understands how to treat my EDS. I'm happy I found a geneticist who was able to tell me why I have had chronic pain since I was 19 years old (and I am about to be 24) but it would be nice if doctors knew how to actually treat the condition. EDS can be extremely painful and and PT doesn't really do anything for me anymore because as soon as I get PT done, if I do something like just turn my head the wrong way that half of hour worth PT is totally "undone" so why bother. A lot of people need splints and braces to keep their joints in place, which you often have to have custom made but if you don't have a doctor who knows about EDS, you have a problem! This article doesn't mention that EDS affects every part of you, so EVERY part, like your eyes – a lot of people with EDS have vision problems like severe myopia, cataracts and retina detatchment . There are other complications like Arnold-Chiari malformation that can cause all sorts of problems and that's difficult to diagnose and treat. For me one of the worst symptoms is the fatigue – I can fight through the pain all day but the fatigue is killer and it doesn't mention that anywhere and there is nothing and I mean NOTHING that helps that and I've tried everything. I could go on and on about what is missing from this article... So while it was nice to see EDS mentioned in mainstream media, it's disappointing to see this condition portrayed as just some sort of minor inconvenience that just requires some PT and 2 Tylenol. I cannot work or go to college because of Ehlers-Danlos, this condition is much more than just joint hypermobility and stretchy skin.

May 28, 2012 at 22:04 | Report abuse | Reply

Jeneen Castle Roach I and my children have EDS, hypermobility type. I agree with the statements of alot of the other EDSers on here, This article makes it seem like its not a big deal and easily managed but trust me, it is not. My doctors have tried many different meds to control the constant pain that I have and so far have been unsuccessful because I want to be able to continue to live and work as normally as possible without the side effects narcotics and other strong painkillers. I am glad you are drawing attention to this disease but feel it was taken a bit lightly

May 28, 2012 at 23:25 | Report abuse | Reply

NovemberRain I have 'mild' EDS, and believe me, physical therapy and some advil are not adequate treatment. I consider myself supremely fortunate that I am still able to work (I need to work to have the health insurance). I have been in serious chronic pain for over 20 years. As a child I had more dislocations, falls, injuries and sprains than a child should. My first dislocation was my shoulder while still in the crib. In my teens, I tore a cartilage in one knee, and I think because of that, I started being 'careful' and not doing a whole bunch of stuff I'd rather do. Pain hit at about age 28, and has only let up once or twice since then. I can no longer take ibuprofen, because my stomach can no longer tolerate it. Can't take proton-pump inhibitors for acid reflux because they give me a nosebleed. I cannot get a prescription for eyeglasses that actually facilitates my seeing because my eyes are completely unstable. Prescription works one day, and not the next.
Collagen is the protein building block of connective tissues, and ours is not right. Connective tissue is present in almost every structure of the body, that's why it affects everything. I wish it was as easy as 'finding a team' of docs who could help. I go to a major university medical center, where it seems everyone has the most mild acquaintance with the concept of EDS, but no one is interested in actually helping.
I do appreciate that CNN has posted this article in May, EDS Awareness Month. And I also appreciate that we are able to respond with a more detailed and personal experience.

May 28, 2012 at 23:59 | Report abuse | Reply

Wellsick Thank you for the attempt at educating others about EDS. Sadly, there were inaccuracies, as others have pointed out. When you wake up disappointed that you have to face another pain-filled, brain-fogged day, watching the world go by without you, then you will understand what it means to suffer with Ehlers-Danlos Syndrome. Next time, please research, then report.

May 29, 2012 at 00:19 | Report abuse | Reply

TwistingTriangle Wellsick, you nailed it. CNN's reporting was under-researched. Ehlers-Danlos Syndrome (I have type Classic or I&II) is underestimated and overwhelming. For every woman reading this who's gone through the pain of childbirth, apparently, you've not tasted real pain (never mind every day of your life). Ehlers-Danlos Syndrome is sudden injury, medical bills, prescriptions, co-pays, feeling less-than, constant doctor visits, being doubted – "you don't LOOK sick...", gross amounts of pain and living a compromised life. With no cure. I'd prefer to see EDS not addressed at all then get glossed over in the media.

May 30, 2012 at 05:27 | Report abuse |

mutant-robot As with the other comments, thanks for the continued attempt at educating about EDS. I hope you are as mature as the editors/writers at Maxim and publish a second article that is more accurate. Perhaps talk to a person living with it (nice of you to mention Gioia & post some "nifty" photos of her, did you ever talk to her?)
Your article really does over simplify. Granted, there are so many complications with the many different types of EDS that it would be hard to fit into one article. I'm not sure how many EDS patients the specialist you interviewed has worked with, but I'm interested in learning more about how they are able to "manage the complications quite adequately"- as my team has a geneticist, pain management, cardiologist, hematologist, PT, OT, 3 different orthos (they all specialize in a different area of the body- heaven forbid anyone could treat me as a whole), gyno, orthotics specialist, allergist, along with my PCP that all usually tell me "sorry it is genetic so there really isn't anything we can do." OH, and I should have a neurologist and a rheumatologist however none in the area are willing to see me as I am "out of the scope of their practice." EDS is a genetic disorder, while "managing" is all the best of us can do- each of us presents very differently and our symptoms can vary from day to day. It is horribly frustrating for both the person living with it and the doctors that are willing to take us on as a challenge.

May 29, 2012 at 01:47 | Report abuse | Reply

Andrea As been stated – it's nice to see an article about the condition that totally derailed my life, but I believe this article causes more damage than educates. If you are going to do something, do it right. Maybe next time you want to write about a health condition try interviewing the people who live affected by it an not just the doctors who read about it from other misrepresentative articles.

May 29, 2012 at 05:08 | Report abuse | Reply

sick sunshine Thanks to CNN for bringing awareness of EDS to the public. I have EDS hypermobility type, as do both of my sons. We are each affected somewhat differently. What is not different is the chronic and sometimes severely acute pain. Even with the NIH information, my PCP still doesn't quite get it. I have other illnesses as well, so sometimes there is no way to figure out which illness is causing pain at any given time. I'm way past OTC medications. Have tried many medications – sometimes opiates help dull the pain enough that I can deal with it. There is a lot more information available now via the internet. When my youngest son was diagnosed, the only thing he was told was to avoid contact sports.

May 29, 2012 at 05:15 | Report abuse | Reply

Angie As stated several times above, thank you for bringing awareness to this under-diagnosed disorder. I also agree with the other commenters that the pain associated with EDS was definitely minimized!

I am 34 & was JUST diagnosed 7 months ago after a lifetime of being told I am "double-jointed," just bruise very easily, etc., and to date have had 24 surgeries, 23 of which were EDS related! EDS is sadly often misunderstood, which often leads to someone not being diagnosed until an older age. My real pain started when I was 20, when I was diagnosed with early-onset osteoarthritis, which is very common with EDS. Fast forward to today, & I live with chronic, debilitating pain, which is ALWAYS there, 24/7 no matter which prescription pain meds. I've tried. I also live with 2 types of heart disease, another common EDS problem, which killed my father when he was just 49! My list of associated medical conditions is very long (which is often the case) as EDS affects the entire body.

My children, ages 8, 12, & 13, are also being evaluated for EDS, & each of them have pain as well. My 12 year old's condition is such that she is now physically restricted from doing ANYTHING that normal 12 year olds do... No running, jumping, playing, no gym class, etc., as some of her organs are affected in a way that an injury could cause death.

Ehlers-Danlos Syndrome is a very serious disorder!
I hope that those who read this article, take the time to read the comments & also visit the Ehlers-Danlos National Foundation's website to learn more. The EDNF also has a Facebook page.
http://www.ednf.org/index.php?option=com_content&task=view&id=1348&Itemid=88888969
https://www.facebook.com/pages/EHLERS-DANLOS-NATIONAL-FOUNDATION/294028895335

May 29, 2012 at 07:46 | Report abuse | Reply

MeriLizzie I concur with all of the above comments. While it is nice to see an article during EDS awareness month, this article oversimplifies EDS. I have a rare mix type. Mix of Classic, HyperMobile, AND Vascular. My bio brother (we were adopted into same family) does as well, he has one symptom I do not. Extremely stretchy skin. I wasn't diagnosed until I was 32. I'm going blind and have severe osteoarthritis in both hands. I'm 36 and have lost most functional use of my hands. I nearly bled out giving birth to both my girls. My worst fear is being in a car wreck. I often wonder… if someone HAD listened to me about the pain would I still have use of my hands? Shoulda Coulda Woulda. Doesn't matter now. It is what it is. I'm thankful for my online community through FB and twitter that help me cope daily.

May 29, 2012 at 07:58 | Report abuse | Reply

Paula I have EDS and recently started a video diary about my life with the condition. Please let me know what you think! http://www.youtube.com/channel/UC1DKdZZmJ_zyLMckwxhSxZg/feed

May 29, 2012 at 08:33 | Report abuse | Reply

T. Owens Thank you so much for doing an artical on EDS! I think if you speak to a true expert in EDS you will find a different response from your interview. My son is 8 he has had to have 8 surgeries already. His diagnosis consist of EDS hypermobility type which does not have to be extreme, POTS, Hypermotility, sensory processing disorders, GERD, soft throat, and chronic joint pain. He subluxes his shoulders and knees. He also has changes in his neck as well. The hardest part is getting proper medical care close to home. Many people have to travel out of state to see a true expert in EDS and it takes forever to be seen due to the fact that others with EDS see this person as well. I am lucky to have a doctor that doesn't know about EDS but willing to learn and will do any test I request. My son's PT dismissed him as a patient , reason being... " this is the best i can do for your son and he will have no further improvements". We need help and we need for more doctors to become educated in EDS which includes Radiologist. My son had problems since birth and finally got a dx of EDS when he was 7. 7 years of fighting and illness. I was the one who did the research and requested him to be tested for EDS. Thank you again for doing this artical and giving us a voice.

May 29, 2012 at 09:06 | Report abuse | Reply

Nancy While I am glad to see CNN do an article on EDS, its such a shame that a major media organization does such lousy fact-checking. Articles like this generally do more harm than good. There's no use in "raising awareness" when its misinformation, because most people, and DOCS are already misinformaed. 1. Not all forms of EDS are dominant. Just because the three most common are does not mean the "many more kinds" are. 2. OTC pain meds are not a "treatment" or "management tool" for EDS. One, we have EDS. Advil's going to rip a hole in our GI tract sooner than later. management generally starts for many with meloxicam (for those lucky enough to be diagnosed early) and progress to any variety of anti-sezuires, narcotics, analgesics depending on what works for the individual. 3. Some do have very normal life spans (If you want to call it a life), however there are many heart, bleeding, bowel, GI, and vascular complcations that can cause serious and fatal issues. EDS is not taken seriously, by doctors, the media, or the general public in part due to misinformation like this. Its very discourging for patients of this condition to see articles like this.

May 29, 2012 at 09:25 | Report abuse | Reply

Jen CNN, nice try. However, you didn't speak of how debilitating and deadly some forms of EDS are. You also didn't discuss the disability that hypermobility causes, nor how people with Vascular type rarely live into their 40's. I agree that more people need to know about EDS, but lightly discussing it doesn't help matters. Nor does dismissing it and something one can deal with with a little PT and medication. It also didn't discuss how many surgeries many of us have been through because of easily tearing skin, hypermobile joints or aortic ruptures. Finding a health care provider with any knowledge of the disorder is almost nill and EDS patients find themselves constantly having to educate health professionals about EDS. I would have hoped that your reporter would have actually looked into these group of disorders more than they obviously did. Shame, CNN, shame.

May 29, 2012 at 09:43 | Report abuse | Reply

Joy I, too, am glad to see EDS in an article on CNN.
Sadly, this just adds more fuel to the idea that those of us with EDS are exaggerating our symptoms.
I'm imagining the comments I'll get from friends and relatives - see, all you need to do is have some PT and some ibuprofen and you'll be fine! It's difficult enough dealing with EDS on a daily basis and having to explain my braces, cane and handicap parking. While pregnant with my second child I had to use a walker as my ligaments were so loose I literally was not strong enough to keep myself upright and walking. My legs buckled and the walker was a better choice than crawling around my house as I had been doing. My daughter is 10 and has never had a mother who could run and play with her. Unlike the photo presented, I don't have excessively stretchy skin. I will be 48 this year and have been on Social Security disability for 8 years. The occupational therapist at my hearing said he could not think of anything I could do at all for employment for any length of time.
I wish this were a more well-written comment on the article. Sadly, the tropical storm in Florida is causing an incredible increase in pain and in dislocations and I'm just not up to thinking hard enough to write better.
Please provide some kind of disclaimer about this article not being the case with many people with EDS! No one article can cover all types of EDS and symptoms and this one is just doing us a disservice!
(I have classical EDS, as does my father, my brother and my 10 year old daughter.)

May 29, 2012 at 10:11 | Report abuse | Reply

Debbie McQueen Everyone w/life altering and disabling chronic illness and degenerative disease wants to get better and regain the function they've lost. Some want that badly enough that they are willing to do whatever it takes. For me, that entailed stepping up to the plate, doing my own research and assuming responsibility for my own healthcare, something that sets me apart from most others. In that sense, I'm a zebrelephantt even among my own kind. Call me nuts, call me crazy but I got my life back and that's priceless! If I can do it, others can, too! Where there's a will, there's a way. And as I always say, better late than never.
It took me 30 years but I found the gene responsible for my family's EDS3 along w/the connection to dysauntomia and mast cell disease. In the process, I learned how to put most of our symptoms into remission – all without drugs or surgery.. Identifying root cause is key to finding the most effective treatment, which is imperative to halting progression of the underlying disease process and preventing further complications, By the time I figured it out, I had developed 10 different rare metabolic disorders, all complications of the same inborn metabolic defects having been overlooked and insufficiently treated for most of my life.. Taking this approach has changed my life. I went from being a pathetic invalid, in constant agonizing pain and unable to care for myself, to resuming my passion of farming. We were able to reverse my son's early onset dementia in 5 months and his lifelong bat wings (hyper extensible cheeks) even up and resolved. As a result, our quality of life has improved expotentially!
I took the time to write up my findings and make that information available in the spirit of helping others. Folks now have a choice. If they're not happy w/the level of palliative care they're receiving, they can now opt for recovery. If I can do it, others can, too. The work's been done. All one has to do is act on it. Testing for MTHFR polymorphism can identify those who stand to benefit from treatment. Treatment is mutation specific. Although I did all this myself, there are doctors available now who specialize in MTHFR and can help w/testing and treatment. As long as you do what you've always done, you'll continue to get the results you always got. Time for a change???
http://www.mthfrheds.com
Please feel free to share! And help spread the word: EDS3 is metabolic! EDS3 is treatable!

May 29, 2012 at 10:57 | Report abuse | Reply

OldTexan I agree with you completely, sometimes we have to boldly go where others have not if nothing else just to be able to go out swinging instead of letting EDS take us out without a fight. I found out what you did in an accidental way, I was getting prolotherapy and getting better and I did not know why, I just thought it was the prolo. It turns out that the doctor had added some hydrocobolamine to the solution and by upping my b vitamins allowed my body to start healing.
After finding some b12 blogs last week it all started making sense and like you I agree that if we can learn the precise combinations for the vitamins and minerals for each of us EDS will likely be a thing of the past in a few years.
It is a shame so many are quick to be hateful of those wanting to share helpful information but I know that I have been called names and accused of promoting quackery so I know you have probably seen your share of haters also.
But look at the bright side, with HEDS being the prevalent type and if this helps 700,000 people in the future it was worth getting raked over the coals a little bit.
I Love your webpage and thank you for the hard work and heart you put into it!

May 30, 2012 at 19:42 | Report abuse |

PTF While it is nice to see EDS awareness, it is very important to point out that EDS kills. One aspect of EDS is compromised muscles and ligaments. The muscles and ligaments in my neck, could not support my skull, which then caused a "pumpkin on a spike" type of effect, with my skull coming down into my spine.
My brainstem became bent as a result of this, and the brainstem is responsible for autonomic function. Imagine for one minute, what can happen when your brainstem is bent. With EDS, it is imperative for you to be imaged upright, to see the effects of gravity. A supine mri clearly will not show the extent of how things look.
I had to have my skull fused to halfway down my neck, to help restore brain anatomy. During the same surgery, I had to have my brain decompressed b/c my brain was sliding around in my skull and slipping into my neck, blocking flow of cerebral spinal fluid and compressing the brainstem.
With EDS something is lurking around every corner. It is a lifetime of managing very serious symptoms and problems. Now we are moving onto my heart (b/c that too is a muscle that becomes affected), and addressing those problems.
The hardest thing to accept about EDS is how my two children are affected so young. It is quite scary! Somehow I made it to mid-life before I started becoming "unglued," but my 6 year old has already had two neurosurgeries, and the writing is on the wall for my 12 year old.
Ehlers Danlos Syndrome is something that we are hearing a lot about lately, and that is GREAT.....but unless it is being portrayed like it should be, the awareness will wind up hurting us more than helping us.

May 29, 2012 at 11:02 | Report abuse | Reply

Mark Martino WHile it is wonderful to see coverage of the largely-irgnoed genetic disorder Ehlers-Danlos Syndrome, it was a shame you missed the chance to truly be helpful, and instead passed on several odd misconceptions. First, it is not diagnose according to severity of symptoms; in 1997 a very clear set of diagnostic criteria were written (the Villefranche nosology, http://www.ncbi.nlm.nih.gov/pubmed/9557891). Second, many of us cannot manage physical therapy at all, and those that can, need to be approached by a newer form. Traditional physical therapy can actually injure a person with EDS. For many of us, too, OTC pain medications are off-limits because of associated bleeding risks and digestive track problems. And finally Vascular type is a life-threatening form that takes too many of us early in life.
While your article was welcome, my concern is that it will lead to continuing inadequate and superficial treatment. EDS is no pleasure to have, and the answer to treatment for this potentially horrific disorder is not a pill and some exercise. You can easily get in touch with Ehlers-Danlos National Foundation, the leaders in information for EDS. We can help you discover the truth about Ehlers-Danlos syndrome.

"More than 1.5 million people around the world have Ehlers-Danlos syndrome (EDS). Someone with EDS is born at least every half hour, and many won’t know what’s wrong with them until it's too late for them to be helped. EDS occurs in between one in 2,500 and one in 5,000 men and women, of every race and ethnicity. EDS was named less than 100 years ago, and it remains largely unknown. Recent evidence indicates it may be one of the most under-diagnosed disorders, because there is no cure and many doctors consider EDS too rare for anyone to have. They fail to see that diagnosis is important, not just in accurately assessing how many have EDS, but in getting help to their patients for the many problems known to be caused by EDS.
"Ehlers-Danlos syndrome is a group of disorders, each the result of a unique collagen flaw. Each type of EDS is defined as a distinct problem in making or using one of the types of collagen. Collagen is used by the body to provide strength and elasticity to tissue; normal collagen is a strong protein that allows tissue to be stretched, but not past its limit, and then is safely returned to normal. WIth badly built or processed collagen, some of the soft tissue can be pulled further than is safe, causing damage. Collagen is the body's most abundant protein and can be found almost anywhere, in skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes, and so on.
"Vascular Type EDS is particularly destructive because of potential arterial or organ rupture; life expectancy is shortened with a majority of individuals living only into their forties. Arterial or intestinal rupture commonly presents as acute abdominal or flank pain that can be diffuse or localized. Spontaneous arterial rupture is most likely to occur in a person’s twenties or thirties, but can occur at any point in life. Cerebral arterial rupture may present with altered mental status and be mistaken for drug overdose. Mid-size arteries are commonly involved. Arterial, intestinal, or uterine fragility or rupture usually arise in EDS Vascular type, but should be investigated for any EDS type." https://www.facebook.com/notes/ehlers-danlos-national-foundation/what-is-ehlers-danlos-syndrome/10151543135885657

May 29, 2012 at 11:16 | Report abuse | Reply

Angie Mark, love you to EDS pieces! You have SUCH a wealth of knowledge & are so very helpful to your fellow EDSers!

May 29, 2012 at 14:38 | Report abuse |

Wellsick Mark, CNN should be paying you for your article! Excellent as always! You are cherished!!!

May 29, 2012 at 16:20 | Report abuse |

featherbirdlady Thank you, Mark, for writing such an excellent article (as always). Am EDS Hypermobility Type and have three children with same and a grandson, as well. Seems to have originated with me, oddly enough, as no other members of my family have it. Am not so easily managed with PT and OTC pain meds, but we are working on other alternatives. Here's to hoping that May isn't the only time people become aware of this genetic disorder.

May 30, 2012 at 03:37 | Report abuse |

Delphicdragon Thanks, CNN for getting the name out there, but I am saddened by the misinformation. If only Ehlers-Danlos was as easy to treat as you portray. I urge you to get the facts straight about this debilitating condition and correct the article. I would love it if my EDS was manageable with over the counter pain medications and PT – like others have said here, it's not! Collagen is in EVERYTHING in the body, from the eyes to the heart to the veins. This condition can be fatal! I suffer through multiple joint dislocations every day and cannot maintain a normal blood pressure due to Ehlers Danlos. I urge everyone to check out ednf.org and get the CORRECT information about this disorder and I sincerely hope that CNN will take the initiative and correct their article to accurately portray the pain and disability we all experience.

May 29, 2012 at 12:11 | Report abuse | Reply

parsnippety Thank you, CNN, for this excellent feature on Ehlers-Danlos Syndrome! The media often focuses on the "sideshow" aspects of EDS, like hypermobile joints and hyperextensible skin, without mentioning the organ rupture, pain, fatigue, etc. I truly appreciated how you approached the topic with balance and dignity. The photos in the accompanying slideshow were gorgeous and evocative, and I hope they will help put a face on this rare disorder.
EDS is complex, heterogeneous, and poorly understood, so it can be difficult to sum up in a brief article. Overall, I was very impressed with the accuracy of this piece. However, I'm concerned that, without context, Dr. Kirmani's statement might downplay the life-altering, disabling nature of EDS. He said, "'Even though we have no cure, we can certainly manage the complications quite adequately." Unfortunately, even with the best treatment modern medicine has to offer, a significant subset of us are seriously disabled and live with intractable pain.

I would also like to point out some inaccuracies regarding physical therapy and pain management, because finding appropriate physical therapy and adequate pain management can be uniquely challenging for us. You wrote, "Managing the symptoms often involves physical therapy to strengthen muscles and over-the-counter drugs for pain." It would be more accurate to say, "Managing the symptoms often involves specialized physical therapy to increase muscle tone and a multimodal approach to pain management."
PT for EDS has to be specialized, because traditional PT can actually cause us further damage. It should focus on building muscle tone before muscle strength (many of us are hypotonic), and must avoid exercises that allow us to use our full range of motion.
OTC pain medication often is not enough to control the chronic pain associated with EDS and may not be well-tolerated due to a variety of co-morbid medical conditions. So, pain control in EDS has to be multimodal and comprehensive. In addition to prescription and non-prescription medication, we often use braces, topical creams, heating pads, cognitive behavioral therapy, massage therapy, trigger point therapy, transcutaneous electrical nerve stimulation, and much more.
Anyway, thanks again for helping to raise awareness of Ehlers-Danlos Syndrome, and I'm looking forward to reading your future coverage!

May 29, 2012 at 17:45 | Report abuse | Reply

Jan Dommerholt, PT, DPT

As a physical therapist specialized in the management of EDS, I concur with the previous entries that it is wonderful to see that CNN covered EDS, but the story does not do justice to the many patients with EDS who are either totally disabled, or who are so severely impaired that they can barely function. I see patients who dislocate their hips and knees with every step they take. Others have such poor feedback (or propriocepsis) from the joints in their body, that they may walk routinely on the outside of their ankles without being aware of it. OTC medications are rarely effective. Many patients with EDS absorb medications very poorly; they do not respond well to medications. Even lidocaine patches are not effective to reduce the pain.
The notion of muscle strengthening is often suggested in the EDS literature. Patients are frequently told that they need to strengthen their muscles. A textbook on EDS states that "Individuals often need to be reassured that the pain will ease, but only when the muscles are strong and fit and are protecting the joints more fully” and "“it is often found that the pain is the last thing to improve and only does so slowly and this should be emphasized at the start of the program.” When I presented at the EDS conference in 2011, every participant had been told to "suck it up", exercise and not complain about pain, as the pain would decrease as they would get stronger. Not a single person in the room had accomplished that lofty goal. In my extensive experience with working with teenagers and adults with EDS, I have never met a person who was able to exercise with severe levels of pain. A recent Belgian study showed that the majority of EDS patients (65%) participated in strength training and only 29% received any manual therapy. The researchers concluded that in almost 40% of the cases, physical therapy was ineffective. Strengthening muscles while in severe pain is not the best way to reduce pain in patients with EDS. Most of our EDS patients need extensive manual therapy, pain management, and dry needling for painful trigger points before engaging in strengthening exercises. Add to that the fact that many patients with EDS have other co-morbidities, such as Chiari Malformation, and it it should be clear that the management of patients with EDS is anything but simple. For a personal testimony of how effective physical therapy can be, see http://www.youtube.com/watch?v=O30FfkWhsTI.

May 29, 2012 at 18:38 | Report abuse | Reply

Wellsick Thank you for taking the time to write. I am truly grateful.

May 30, 2012 at 17:57 | Report abuse |

Dolores Leba My daughter was recently diagnosed 7 months ago with EHLERS DANLOS SYNDROME,after having three Heart Surgeries for Svt-Avnrt her heart rate was as high as 282 bpm,now suffers with POTS-autonomic dysfunction,that keeps her weak and home alot and missing normal teen activities.Recently she has suffered alot of pain and swelling in her joints-knees and shoulders which put her in two cycles of physical therapy and she has missed gym classes,and two violin orchestra concerts things she loves very much, and now off summer swim team.This is a blow to her child hood as it also has brought on serious allergic reactions to medications and foods that make treating her more difficult .Gabrielle has a brother and sister who may have it but haven't been evaluated as of yet.Her Brother has scoliosis and also one Heart surgery.He too has been greatly affecting with pain and sleepless nights of agony and illness with no sign of when their life will get better.
I have been ill for 25 years and now this is this missing piece of my mysterious puzzle-EDS -HYPERMOBILITY.
Please let there be cure soon as children are suffering lifetimes of illness with no way out of their own bodys pain and endless suffering,and loneliness.

May 29, 2012 at 19:40 | Report abuse | Reply

Buffy Thank you for your coverage of Ehlers-Danlos Syndrome. However, I must disagree with your statement that EDS can be managed with OTC meds and PT/strengthening. I am disabled from EDS and have been unemployed as a result for the last two years. I had many years of education, having obtained one Master's degree and almost completing another. This disorder has robbed me of my ability to work, as I am barely able to use my right arm, have a torn tendon in my ankle, and extensive spinal damage and arthritis in all 3 sections of my spine. I have had many surgeries, and have been in PT for the last eleven years. I have headaches, pain, nerve damage, and great loss of function. I have been told by doctors that EDS does not cause pain. I have high blood pressure due to pain. I am usually at a pain level of 8, even with pain medication – pain medication that has been stopped on several occasions because, as I said earlier, doctors are of the opinion that EDS does not cause significant pain. I appreciate CNN's coverage of EDS, but I wish the portrayal were more accurate and more descriptive of people like myself and others I know. I have yet to meet someone with EDS who does not have significant pain.

May 30, 2012 at 12:32 | Report abuse | Reply

Joanie

CNN needs to take this article down. This doctor has no experience with EDS and makes it sound like this it's psoriasis or something, when it's incredibly debilitating and misunderstood, as this doctor shows us with his ignorance.

May 30, 2012 at 14:24 | Report abuse | Reply

Marion I found this article quite interesting in several fashions: 1) the amount of information in the comments far outweighed the original article; 2) the stories posted in response reflect not only the physical pain that EDSers commonly experience but the depth and breadth of psychological and social trauma associated with misinformation; 3) on the heels of Memorial Day, it's important to note that many of our troops and veterans suffer with EDS in one fashion or another (myself included – vascular type) and it was in the military that I was lucky enough to find myself at Johns Hopkins getting the dx that I needed (after several muscle/arterial ruptures in the legs and family history were analyzed) – that care however – is not afforded to everyone so spread the word, ask the question of your doctors and share information from University of Washington/NIH/EDNF; 4) finally, I'm blessed to be here today yet tortured that I'll not have accomplished all that I need/want before I pass on.
Gratefully, EDSers are strong in community, patient advocacy and education in their own right. I'm blessed to not live in chronic pain like many of my compatriots but not unlike others I live in fear that I'll go too fast, too hard, and try too much and face another complication. Alternative therapies may help in lieu of (in my case, the allergies, cramping, and even bruising have been minimized) or alongside allopathic therapies, I wish the best to everyone and hope CNN continues to investigate and provide well-researched articles in the future.

May 30, 2012 at 14:42 | Report abuse | Reply

Dee Nee BTW, how is Gioia learning? Regarding the articles statement: "photos of Gioia as she learns to deal with the condition". Maybe fellow EDS sufferers (oops, or is sufferers too strong a word from the way EDS is portrayed in this article). I can't figure out what the 'learning' is by looking at the photos. I'd love to know because it sounds like a 'cakewalk' for her and the photos are quite engaging.
Oh, and I grew up without a mother. She died of organ rupture when I was 1. I watched my grandma have to sit trapped in a chair for many, many years. She couldn't move her arms to dress, wash her hands, nothing. The pain must've been so awful that she was unable to move her arms and they both 'froze'. PT is encouraging that I move my arms to prevent that. What an 'aha moment' that was. I mention this in regards to the milder symptoms that are cited in the article in reference to past generations. Yeah, milder. Sure. I hope they were milder for my family because I would hate to think they had to live through this debilitating mess. At least my mom died when she was 26 and, to my knowledge, her body wasn't betraying her daily and her organ rupture was sudden and completely unexpected. I grew up with no mother. Oh, btw, my grandma was very stoic and known as a 'tough old bird'. She ultimately ended up with late stage cancer – WHICH I SUSPECT THE ONLY WAY SHE DIDN'T KNOW SHE WAS THIS SICK WAS DUE TO THE CHRONIC DAILY PAIN. She was a nurse and it just doesn't make sense that she didn't know she was so 'blown out' with cancer. I cannot detect when I am sick due to the many layers of pain, nausea, suffocating exhaustion that I experience daily. Even when I do actually vomit, I feel confused about whether or not it means anything. I've awakened in the night by my nausea and been forced into the bathroom to become ill. I ignore it and hope that it is nothing serious. My mom said she was fine and just had the flu – then she was dead. We're not wimps! Though many doctors prefer to behave towards me as though I am: a hypochondriac, pain med seeking, wanting attention, a pain wimp, a liar, an exaggerator, etc. I don't have much left beyond my integrity and this type of treatment 'cuts deeply into the bone' of my decency of character. I find it highly aggregous and profoundly offensive! I've had babies with no IV and no anesthesia whatsoever. I know pain and, if I am telling you that I am in pain – then it is likely far worse than I am stating!!! And, NO, I will not take narcotics – I want more function versus less that pain meds will afford me – plus, my stomach has never ever been able to tolerate even the most modest of medications. What, just drug me to shut me up? Catch 22 – why, yes yes – it is!
The doctor in this article sounds like he holds the 'quick and easy fix' for any and all EDS sufferers (oops, is it ok that I use that word). He should publish his studies and educate/enlighten us all. I'll bet all affected by EDS would travel to him for his CURE! Believe me, there's a market for his OTC cure. This has had a devastating impact on several generations of my family and I'd like to know the simple fix. BTW, I hope it's an OTC that my digestive tract will tolerate since I spend a good amount of time trapped with my toilet – but I'm sure there's an easy cure for that too, right? I experience flu symptoms EVERY DAY, cure for that? I'm not even willing to waste my time going into all of the hideous symptoms because it is so many and they are of such severity. I'm just glad to know that there is OTC tx that is fast and effective. Maybe it'll fix my heart too. Where to purchase and how much?
Oh, and what is Gioia learning in her pictures. I want to know how to deal in a nonchalant manner – like it's nothing. Believe me, I've tried and was quite successful until it really 'hit the fan' for me!

May 30, 2012 at 15:46 | Report abuse | Reply

cindyh@new.rr.com The comments from others with EDS are reflective of my experiences. I've had over 40 surgeries from the collagen defect in my tendons,ligament cartilage. I have multiple joint dislocations daily.. OTC meds are useless in addressing the resultant pain......think how your joints would feel. How I wish EDS was as simple and innocuous as this article portrays it. I lost the dearest friend to EDS. She was diagnosed with the hypermobile type.....but on her sudden death it wad found to be the Vasular type. In less than a year her son died also. I have classical type and multiple small aneurysms on the abdominal.arteries......this is not a disease to take lightly!!!!

May 30, 2012 at 16:35 | Report abuse | Reply

Dee Nee http://www.youtube.com/watch?v=8Q-IZD1JvlU&feature=related , copy and paste this is informative and highly applicable (in my opinion) to what EDS is like. The person who compiled this appears to have complied in and posted during EDS Awareness Month of 2011 (last May). THIS ONE IS A VERY EASY TO UNDERSTAND ACCOUNT OF MANY ASPECTS OF WHAT EDS IS LIKE (in my opinion).
I tried to post this, as well as some other thoughts, quite awhile ago but it 'won't take' so I hope to at least be able to pass along this link (above). I'll probably give up on trying to post and am not sure why it's not showing up. Odd. I am aware that there is one post by me regarding my thoughts toward it being something that is milder with previous generations. It's a diff post that I seem to be disallowed to share. Anyway... Please see the link above if you're interested, from a *lay standpoint, in EDS. *I'm not in any way implying that the creator is lay, only that I believe it is described in a very simplistic and easy to grasp manner.

May 30, 2012 at 16:51 | Report abuse | Reply

Camille Thank you for the very brief explanation of EDS. As the many voices have stated it is so much more then just the review that was written. Life for many EDSers comes to a standstill at an incredibly young age, and many are recluses because of the chronic pain. There is no possible way the pain can be managed by OTC drugs, and Physical Therapy is sometimes more damaging to EDSers then what is led to believe. Research being done is very myopic, focusing on the Vascular and not the plethora of suffering EDSers. NIH has been a Godsend for many, yet Doctors and funding are minimal for them also! It would be wonderful if CNN contacted the National Foundation and researched this on a much deeper level. There are a few other groups out there, but this one has been around for many years and their guidance to help EDSers would be a great way for CNN to get the correct info out there! Thanks for stepping up to the plate, with this summary.

May 30, 2012 at 18:41 | Report abuse | Reply

BRENDA BRIDGES Thank you for trying to address EDS. I had EDS all my life and only got diagonised 2 years ago at the age or 48. I went to the Rumatologist for pain. he did numerous test and said that he thought I had Ehlers-Danlos syndrome. Imagine my surprise since I was previously diagonosed with Fibermyalgia. I have had pain all my life and was beginning to believe that it was in my head. I got it from my dad's side of the family. my dad died at the age of 66. But my grandmother lived to 90 and was completely crippled with arthritis. She got from EDS and it over stretching her tendons and liagments. That's whatI have to look forward to. I have so many problems with my ankle that I have to wear a brace. The Dr.'s said that my space between the bones was very small. It was from my tendons and liagaments stretching too much. Now what? They can't replace them. I live with pain everyday. This has not been a fun diaganosis but I finally know what is wrong with me. I am not crippled enough to be diabled. But that is what I have to look forward too. I work with elderly and they all said you are too young to be that stiff and sore. They don't understand this disorder but they have sympathy for my pain. They have similar pain. I would be nice if you did a indepth article on EDS and the pain that goes with it. Also the different types and signs/symptoms. Education is the key to any syndrome and illness.

May 30, 2012 at 19:51 | Report abuse | Reply

Smileypeach Salman Kirmani? An "EDS EXPERT AT THE MAYO CLINIC". I am sorry, I've never heard of him and I know (at least the names) of every Doc in the USA that is an expert. This article did minimize EDS in numerous ways. EDS is a tough disease, to survive it with a smile and sanity takes lots of determination, tons of strength and ooooodles of tenacity and faith. A great sense of humor never hurt any of us Bendy Friends either! It's hard to look at it on a positive note sometimes because it's very painful and highly complicated and misunderstood. I adopted the motto at diagnosis "If it is to be, it is up to me". I will never let EDS win. CNN. IF YOU WANT TO TALK WITH A TRUE EXPERT...PLEASE CONTACT DR. MARK LAVALLEE, he practices in South Bend, Indiana. He not only is an EDS expert as a physician but he also has this disease and OVERCOMES it DAILY!!!!!

May 30, 2012 at 20:53 | Report abuse | Reply

Cassandra I to have EDS and as much as we may talk about EDS and share our stories on postings like these they do little to help raise awareness or found research. With all the people I see making comments on these posts I think there has to be a way to let people know that we are here and EDS is real, it can't just magically be fixed and its not going away. I also believe that as a community there should be a way to help support one another and get support for our families. The hardest part of this disorder for me isn't the multiple surgeries or the insane pain the medication didn't help but rather that no one person including my family knew what I was going through when I was a young person with EDS....something to think about. EDS is a rare disorder but that doesn't mean we have to lay back and take it. I we can type on a computer as seen in above comments then we can help people understand the truth.

June 8, 2012 at 19:34 | Report abuse | Reply