My twin sister has the same dibilitating issues and suffers from the arthritis refered to in the article. My sister was not properly diagnosed until she went to the Mayo clinic in MN, unfortunately it affects the valves in her heart. It's a wierd thing to watch as a twin sister; I'm both saddened and fortunate that I don't suffer the way she does. We are 34 years old, she was diagnosed before the age of 30.

I would never be offended by a doctor having to look up stuff. As a family physician and doctor, we all look things up on a regular basis and that includes the rare diseases to the bread and butter diseases to update ourselves on everything from the general presentation of a rare disease to the most up-to-date treatments of hypertension. I would say you found a rare gem in a doctor... one who understands his or her inability to know it all before you walk in the clinic and who is also honest enough to be frank with you about it as well. Best wishes on your lifelong challenges with Ehlers-Danlos.

I would never be offended by a doctor having to look up stuff.

I'll even do it in front of my patients-it makes them feel like they are taking part in the diagnosis and treatment process. I have never heard a negative comment from any patient or parent regarding this.

My Rheumatologist is still my Rheumatologist BECAUSE he brought out the book as part of the diagnosis process. I saw him as a human being who did not claim to know it all, but who knew where to look and was willing to go there. He gave me some GREAT advice - get educated about your condition, copy, print or purchase every bit of information you can and keep it in a file. Having EDS Type 3, I wind up at the ER about 2x per year with a dislocation type injury - so I have found it very helpful to be able to educate the ER docs on the condition so they don't make it worse, or dislocate something else in reducing the initial injury (an example is, after a posterior/inferior dislocation of my left shoulder, the doc dislocated my elbow and clavicle - wound up having surgery 3 days later).

i didnt now what gumbo was untl i wnt to new orelans for the firs tim

Susan,

I was reading through some of the posts after the story. My Fiance told me he'd read it earlier today and that I may be interested. I had to respond to your post as it is so similar to my own life. I am 28 yrs old and I did not get a diagnosis until 2 yrs ago. I have battled with pain my entire life and my Mom would take me to doctor after doctor and always get the same answer that I was just suffering from growing pains or only to be told there is nothing wrong with me and that it was all in my head. I'm a little bit stubborn I have to admit and so I stuck to my guns and continued the fight for answers. I grew up the child of the military and so this also put the delay on any answers. Moving over and over getting a new doctor and having to start the process over every time. Long story short, I have had joints dislocating since I was about 10 yrs old, arthritis in all my joints since around the same time... The pain is hard to deal with but you don't have much choice. I wanted to let you know that I am also a mother of two little boys. I saw that you said your daughter may have issues with carrying a baby full term and she may. I have a pretty sever case and I had preterm labor with both boys. The first wasn't as bad and he was only a month early and healthy but is having more long term learning disabilities... I lost a baby between early on in the pregnancy and got pregnant not to long after that with my second son. That was a very hard pregnancy. I did not have a diagnosis and so had no clue about EDS. I went into labor at 24 weeks and they almost killed me trying to stop my labor. The one blessing that came from the EDS is that one of the side effects of EDS for me is I'm severely deficient in magnesium and that actually saved my life. I was put on the highest dose possible of magnesium to try to stop my labor which put me into a drug induced coma where I could hear and feel everything going on but couldn't move, breathe, blink ... nothing. When my medivac landed at the new base the doc there was totally blown away because I should have been dead with the amount of meds they had pumped into me. Later when I finally got my diagnosis it all made sense why it didn't kill me when its been know to kill women twice my size! Anyhow, my second son was two months premature and had to spend a while in NICU. Both boys have EDS but thankfully show no signs of suffering to the extent that I do. I have finally found a group of doctors who didn't really know much about EDS but who have taken the time to stop and learn a little as they can and try to find new ways to help me live a life as close to normal as it gets with this condition. The pain and the side effects are awful but its a day to day struggle. The bad days I have to take a deep breath and remind myself that this isn't just a fight for my life daily but also a fight to learn as much as possible to try and make it a little less traumatic for my children if and when they develop my issues. I'm on a newer pain med which is pretty good and I try to just thank God for the blessings I have and not be to caught up in what I cant control. Anyhow... didn't mean to go on for so long but being so close to your daughters age and having the same issue I wanted to share my experience. If you want to talk more Id love to hear more from you and your daughter! I can find a way to get you my info! I hope this helps some and I hope all those here who suffer are able to find peace in knowing you are not alone! You can find me by name on Facebook but make sure to say you found me through here so I know its not a joke.

Sincerely,

Shelley Vaux

A clue I pick up that allows parents and doctors to discuss the possibility of Ehlers-Danlos in young children is if a child constantly has a dislocated elbow after picking them up by the hand or forearm. What happens is that the head of the radius slips out of the annular ligament that holds it firmly against the ulna. It is usually easily fixed by pressing the palm of the affected hand to that same side's shoulder. Usually this is dismissed as frequent "Nursemaid's elbow" but it could warrant an earlier look for Ehlers-Danlos if it happens frequently or occurs frequently beyond the age of 4 or 5 years after the annular ligament should have been able to better hold onto the radial head.

I have Ehlers-Danlos syndrome also. I absolutely hate hate HATE this article. So we are "cringe-worthy" people that sound to the author like something out of a "circus show"?

I'll tell you what I find "cringe-worthy" -- insensitive, insulting articles like this.

Google it...lots of info there.

Reply to The Anatomist - the dislocated elbow is exactly the first symptom that my daughter had.

to MGinRochester - I do not believe he was saying the person or disease is cringeworthy. I read it as the things you can do are cringeworthy - believe me, when I saw the photo of the finger pulled back, I shuddered! I would not want to see people doing this, whether just due to being double jointed or suffering from a disease. Boys especially delight in doing things that make people cringe, regardless of the how or why!

to MG in Rochester- it is 'cringe worthy' because for most of us, the thought of being that flexible immediately brings to mind thoughts of PAIN. which we would have if we tried to do that! and the boy in the picture is obviously doing that to his hand to make people cringe that way

you as a person are NOT your disease, and maybe you need to try not to define yourself by it.

Allie22, perhaps your reading comprehension could use some work. I didn't say (nor did I even remotely imply) that I was defining myself by my disorder. I was objecting to a particular way of PRESENTING the disorder -- by putting pictures like that up and emphasizing the hyperflexibility of the disorder rather than the immense pain and suffering that it brings to many of us.

The way the author presented it makes it sound like she took one look at that picture and immediately sent it to all of her friends with a message of "OMG LOL".

So... once again.... I am objecting to the way the disorder was PRESENTED IN AN ARTICLE. How you got from that to the idea that I was defining myself by the disorder is a mystery.

I know the article is lacking on the full problems with Ehlers Danlos Syndrome, but hopefully it can get some awareness out about it.

and actually.. a lot of circus sideshow acts had Ehlers Danlos Syndrome. I think it is actually great to get some awareness out about it, even it is little.

Though I don't have a debilitating version of it, I still keep an eye on it. I rarely do my "tricks" anymore and glad there is a forum like this, so that people can talk about it.

For more info you should check out: http://morphopedics.wikidot.com/ehlers-danlos-syndrome

I agree that he should stop the tricks. I have Ehlers Danlos as well, but I have type 3 unlike the man in the article. By keeping up with the tricks in the long run he is going to cause himself more problems with those joints or areas. My brother, whose EDS is worse has been told by doctors that repetitive motion causes his joints to break down faster.

Right Wing Extremist...
You don't read much, do you? LL did describe the various other ways of getting stem cells. LL also correctly pointed out that most embryonic stem cells are not obtained from aborted fetuses, but come from unused blastocysts resulting from in vitro fertilization. So there never was really a need to "debate" the use of stem cells on those grounds--it was an ignorant argument from the beginning.

That being said, we are probably a LONG way away from stem cells being useful in this sort of disease. It's much easier when it's a disease of the blood or a single organ. This disease is something that affects the entire body. It may be possible some day, but the diagnosis has to come much earlier.

Dragon, the point by Rightwinger was not about what was or was not available now as an option in stem cell research, but merely that someone was small minded enough to need to use such an article as a bully pulpit to attack those evil Republicans. There are some of us so insecure that we evidently need to use any occasion possible to put someone down, thereby achieving some sort of smug self-superiority so desperately needed to justify a pitiful existence. Get a life.

But I suppose the right wing-nuts think it's better to just throw out the aborted fetuses, rather than giving their short "life" some meaning by possibly helping to cure disease.

You know, it's just a matter of time until doctors will be able to take your own cells and grow them into whatever you need -- a heart, lung, liver, kidney, etc. Since it's your own tissue there'll be no problems with rejection.

right wing extremist blasted liberal librarian for going political. then proceeded to go ahead and go political too. both of them then dragged out their stereotypical argument. who knows- may even be the same person doing a troll for all we know...

maybe what the world needs is a whole lot less 'liberal librarians (and other professions) and a whole lot less 'right wing extremists'; those types are always so proud to sport their own labels as they are busy pinning labels on everyone else... how about a whole lot more 'middle of the roads' since polling shows that THAT is where most of us Americans actually live! we just don't have a whole lot of need or encouragement or inclination to pack our label-makers around... dangit, ya'll made me go political too!

ok, now back to the non-political, intelligent discussions. I was enjoying them up to this point

Jamie, I wasn't going to comment on this post, because I know nothing about this condition, but after reading LL's comment I couldn't let this go.

Wishing all of you a Merry Christmas!

I read LL's comment as a medical comment, not a political one. I think the only people who would interpret LL's comment as a political argument are extremists (ahem) who are instantly offended upon reading the word "liberal."

@passiveobserver...took the words right out of my mouth!

I'm not referring to any specific post on this article as being political. It's just that Right Wing Extremist's post got me thinking that it does seem like most articles have one or two people that have to make a political statement even though the article has nothing to do with politics. It's actually kind of amusing!!

I hate to disagree "passiveobserver", but LL did bring in politics with his/her comment. If he/she hadn't, it would actually be a good comment, but to throw the old "perverse and pervasive screeds by the Radical Right" just irritated me. I'm what you call a liberal, so don't start in with your "oh, you must be hyper-sensitive because your a Republican" crap with me. Why couldn't self-proclaimed Liberal Librarian have made their argument without the political nonsense?

For this sort of disease, stem cell research is not quite applicable, so bringing it up on this post doesn't make too much sense to me, either.

I agree whole-heartedly with Jaime...why do political idiots feel the need to butt their noses into everything. I got into the comments to see if others with this disease noticed how this article makes this disease sound like a carnival's fun-house...scary, but fun! This disease is pretty serious from the sounds of it and this article makes it sound like a cool super power?!?!

I know a family that suffers this, it is unusual, but the article didn't really capture how terrible it can be for a child or the other health issue associated. It sounds like the fellow they interviewed is both a positive person (which is great!) and has only some portions of the disease.

Hypermobility of it all can impact a child's ability to walk, learn to write, etc...one of the children in this family has suffered this fate (they didn't even know the disease existed until the spouse had a heart issue...always just thought he was really flexible).

Then there are the issues like the heart....which is a complication that can result in any connective tissue disease, but is more common in this one. Any connective tissue disease can impact any part of the body where you have things being 'connected'...so anywhere, heart, eyes, major organs, it is just most prevelant on the skin and joints.

In the end though, having a positive attitude and seeing the uniqueness of it all, while dealing with the struggles seems to be the key. At least that is the case w/the family I know. I had never heard of this odd disease until I met them, but their children are an inspiration...through adversity, you can not only survive, but be happy and super great!

I completely agree! Reality will hit him once his pain starts...I was mostly pain free until about 19 and I thought all my "tricks" were pretty fun. Now, I wish I had been told sooner (and listened) that it was going to make my life so much worse down the line. As nice as it is that they have chosen to write an article and hopefully raise awareness, there is too little emphasis placed on the pain, the increased risk for other disorders, such as POTS, and the severity that can affect us, such as wheelchairs and organ failures.

It seems as if his condition isn't quite as bad.

Read the article before you start ranting.

Thank you.

I completely agree, BugsMom33. While reading this article, I could practically hear the author's "OMG ROFL" reaction.

Alicat - the thing is that you don't know how you are hurting yourself until it is too late. That's part of the curse of EDS. Also, many injuries are completely spontaneous - so bending his fingers back right now might not cause them to dislocate, but one might suddenly dislocate for no reason a month from now. I know it sounds absolutely crazy, but it's the truth. It's the way EDS works.

I just got back from a surgery follow-up. My stitches have been 8 days, and have not even begun closing. The doctor said "normal" people's would have been closed within 2 days. She told me at this rate I have another good 2 weeks before mine heal. Surgery isn't recommended for EDS'ers unless it's a must have for these reasons. Unfortunately, I had to have a lumpectomy so there was no choice. However, things like my knees where are an absolute mess at 34 are being left alone and treated for pain and with bracing, because they don't want to do surgery until they absolutely have to. For me, that will be when they need replaced. How many people get to talk about when knees will be replaced at my age? Not many...

Then lets talk about the days where my daughters hips sublux. That is a partial dislocation. It happens in her sleep, and then she wakes up in horrible pain and cannot move. Have you ever had to listen to a 10 year old crying in pain and know there is nothing you can do about it? It's horrible, and I've been doing it for years already.

Anyway, my point in general is once again it isn't something to take lightly. And to Alicat, he could be effected less than some of us, but more than likely he just hasn't started experiencing the pain yet. Odds are totally against him that it will happen in time. My pain didn't start until 32, and by then tons of damage was already done. And I didn't walk around doing party tricks, it's just from living life with too much flexibility. Your body is always working extra hard to hold itself together and in place, and naturally you overextend yourself on a daily basis because you don't even know what a normal range of motion is.

I hope this helps someone a little. :)

Hi Bugsmom33,

My daughter was just diagnosed with EDS. Her knees have been hyper extending and patellas have been dislocating. We have been unable to find braces that prevent that. You said in your comment that you had knee braces. Are yours to prevent hyper extension? If so, can you tell me the brand and model number? We're desperate to find a solution. She's been in the ER more than 50 times to get her joints back in place, all under conscious sedation. This is only since June. Any suggestions would be greatly appreciated!

EDS is not equivalent to being "double jointed". Maybe in it's mildest forms it could be but at 21 I've lost almost everything I loved because of EDS. My life now revolves around my countless braces, doctor's appointments, and my wheelchair. EDS transformed me from a nationally competitive swimmer, student, employee, and primary caretaker of a 3 year old to a bedridden shadow of my former self. Comparing this disease to being "double jointed" belittles everything I've gone through and the lives that have been lost to vascular issues. As I write this my sister is in the ER with a probable appendix perforation just months after having to have her gallbladder removed and weeks after her son had rectal prolapse and a GI bleed. EDS is a very serious condition and should not be thought of any other way.

LOL. and before someone jumps on me for laughing at you, I'll point out that I have EDS.

Thank you for "getting" it. I only made the comment because it seems he doesn't have a 'poor me' or 'please feel sorry for me' attitude. He even mentions entertaining his family and friends.