We have Ehlers Danlos Syndrom Diagnosis - Mothering Forums

 
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#1 of 23 Old 09-30-2005, 12:25 AM - Thread Starter
 
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Hi I myself and two of my 4 children have what is called Ehlers-Danlos Syndrome. It is a challange raising children with rare conditions let alone have it youself. My new baby who is 10 months is free of this condition it was a 50/50 chance it can be passed on.

I will explain the gist of it below but you are more than welcome to visit my Homepage for more details and pictures.

Please Note I am still working on site.

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome (EDS) is a group of inherited connective tissue disorders, which cause articular (joint) hypermobility, shin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their signs and symptoms. Each type of EDS is a distinct disorder that "runs true in a family". This means, for example, that an individual with Vascular Type EDS will not have a child with Classical Type EDS.

Individuals with EDS have a defect in their connective tissue, which is a tissue that provides support to body parts such as skin, muscles and ligaments. Abnormal collagen, which is a protein that adds strength and elasticity to connective tissue, causes the unstable joints and fragile skin seen in individuals with EDS. It is estimated that about 1 in 5000 to 1 in 10,000 individuals are born with EDS.

EDS More Defined:


Ehlers-Danlos Syndromes are inherited in the genes. As a rare connective tissue disorder characterized by defects of the major structural protein in the bodies collagen. Collagen is a tough fibrous protein that plays an essential role
"holding together" strengthening and providing elasticity to bodily cells and tissues. The different categories are based on genetics into different types with many differences between patients in any given type.

The diagnosis of EDS depends upon the clinical findings. Many people do not fit exactly into one of the specific types of EDS. Due to defects of collagen primary EDS symptoms and findings include:

Though there are a variety of Ehlers-Danlos Syndromes all types share common features such as easy bruising (may be severe) clotting abnormalities, joints are abnormally flexible, loose/unstable joints (articular hypermobile) which are prone to frequent sudden dislocation and or sublexation resulting in pain and possible emergency. Hyperextensible joints(move beyond normal range) congenital hip dislocation, abnormalities of the ligaments. Sprains and strain occur frequently.

Abnormal Loose Skin.(laxity/Hyperextensible), weakness of tissues, severe scaring, slow/poor wound healing, delayed/poor tissue healing, development of molluscoid pseudo tumors, Flat footed, club feet (seen in vascular type

Musculoskelatal Pain.(early onset debilitating) Poor muscle tone, ambulation is impaired- hand strength and upper extremities dysfunction, back and neck pain, spinal deformity scoliosis (more common in KyphoScolios Type) but not limited to such.

Abnormalities to organs fragility to membranes.heart mitral valve regurgitation/prolapse, (arterial ruptures varies in types) Bowel/Intestinal Trouble, (Perforation/Ruptures varies in types) Constipation, Gastrointestinal function is poor, Retinal trouble, Uterine perforation varies in types.

Their are 6 Major Types of EDS; We have been diagnosed with Classical Type which consists of....

Marked Joint hypermobility, joint dislocation/sublexations, hip dislocation. Joint instability can lead to sprains and strains. Skin hyperextensibility (laxity), and fragility. The smooth velvety skin is fragile and tears or bruises easily. Wide atrophic scars, Cigarette paper scars, Scoliosis is common, poor eyesight
(nearsightedness is common) In some cases, muscle hypotonia (floppiness) Classical type EDS is caused by abnormalities in collagen type V. This Classical type is inherited as an autosomal dominant genetic trait.)

Blessing to all the moms and dads out their with children that have special needs
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#2 of 23 Old 09-30-2005, 01:03 AM
 
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That's so interesting!! Thanks for sharing!

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#3 of 23 Old 09-30-2005, 01:19 AM
 
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Do your children have more serious effects from the EDS than you do?

I too have EDS, but my symptoms are livable. It seems that my symptoms are worse than my mothers and, in turn, hers are worse than her mother's.

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#4 of 23 Old 09-30-2005, 02:32 AM - Thread Starter
 
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Quote:
Originally Posted by Apricot
Do your children have more serious effects from the EDS than you do?

I too have EDS, but my symptoms are livable. It seems that my symptoms are worse than my mothers and, in turn, hers are worse than her mother's.
Hello,

How long may I ask have you had a diagnosis of EDS? what type do you have?
How old were your children when they were diagnosed? did you know when they were born just by holding them I did. The first thing I said when my daughter now 8.5yrs old was what is wrong with her feet? she was also born with hip dysplasia but she wasn't diagnosed with EDS until she was 3yrs old. Her hip dysplasia was corrected thank God by using a pavolik hip harness and rhino bucket set brace till she was 15 months old. They should of found this at birth but they didn't until a routin 2 month check up he said her leg was just flopping.

Anyway we were diagnosed in August of 2000, as you know each EDS case is a unique case meaning each person in the family can have the exact type of EDS but vary in symptoms. For instance my daughters legs as you can see on the site under Hypermobility Child he legs are very, very hypermobile they blew the otho doc's measuring charts off the records. She has bi lateral AFO braces and absolutly hates them. The goal of them is to keep her from hyperextending her knees back which causes her ligaments behind the knees to become more laxed. They hope that if she wears these braces daily that for one she won't injure herself and last but not least that she will have stronger legs when she is older. She fights us about wearing them all the time.

My knees as you can also see in hyprmobility in adults are no where near her range of motion. I have several other problems early onset of Osteoporosis and will be 36 in March but was diagnosed with this when I was 32. My joints hurt and some days I can hardly move them, but I am a fighter and don't give into my pain and suffer to much. My little 2.5yr old also has EDS and his shoulders seem to be more unstable than ours and his knees do not hyperextend very much. Now his fingers are another story see his pic's at Hyprmobility in baby.

With EDS you just never know what the next day holds, I do know that if I do alot of cleaning and or folding simple laundry I will be in alot of pain the next day or two.

I am very thankful I have a 18.5yr old who is my arms when i need them he helps me out alot, not quite sure what I am going to do without him yet as he just graduated form highschool and wants a job, I know I have to let him go and move on. praying that someone will come along and help me out.

Thanks hope to share some more later
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#5 of 23 Old 09-30-2005, 03:08 AM
 
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Laughing about your 18 year old. I did that for my mother all growing up. You'll find a way, I know it.

I have Type III, but my niece died last year from a bowel perferation. You know what they say, treat everyone as a Type IV until proven otherwise. I don't have nearly the hypermobility of your children, but I still suffer. I go through life holding a mental image of what a normal body does and I hold my body into that form. I have stopped all the "parlor tricks" since I tore all the ligaments in my ankle in a way that is impossible to do. I don't want to push anything now that I know the pain of ONE really screwed up joint. I was prepared for a slow decline in my hips, knees, and shoulders, but the rapid onset just knocked me for a loop. I don't know how to convince a child of that since I just got it myself. Somedays I feel like a motocross rider who broke everything twice.

I don't have children yet. I'm scared. My partner has hypermobile joints and elastic skin. He shares my paper thin skin and visible blue veins. He can pull the skin off his arm s-t-r-e-t-c-h-i-n-g it about 3-4 inches. He won't go to a rheum and no one can tell us anything anyway.

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#6 of 23 Old 01-19-2007, 03:15 PM
 
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I have just been diagnosed with Ehler Danlos - Hypermobility type.
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#7 of 23 Old 01-19-2007, 03:37 PM
 
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How wide is the range of severity of symptoms?

I don't think that I have it as I wouldn't meet all of the criteria but it's really interesting to read about this since I do have some of the symptoms.

I can easily bend the first joint of my thumbs backwards far more than 90 degrees, and all of my fingers can bend sideways very far and I have many issues with joint pain and hip problems. My hips have never dislocated but I have many problems with the "location" of them - they often feel like they might pop out and if I sit in any positions where they are wide, they tend to keep going.

I have similar knee joint location issues and problems with my ankles as well. I never really connected all of it before - I've just treated each problem separately. Now I'm wondering whether I am having the same problem with each body structure. I'll talk to my doctor about it.

Thanks for sharing and helping me!

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#8 of 23 Old 01-19-2007, 04:02 PM
 
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I'm glad you posted this! My 10-yr old's best friend has EDs, and I've appreciated learning a bit more about it from your post and your site.

Joni : and kids, incl. Michaela, 10, spinner in purple wheels, and Gabriel, 8, T21 and autism
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#9 of 23 Old 01-19-2007, 04:40 PM
 
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Wow. I never even knew such a thing existed. Welcome to MDC.
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#10 of 23 Old 01-19-2007, 06:29 PM
 
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My sister-in-law has EDS. I have no idea if any of the 4 children do. Hmmmm...
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#11 of 23 Old 01-20-2007, 12:04 AM
 
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I also have EDS. I was diagnosed at 14 after long speculation and tissue biopsies. I was thought to have Marfan's syndrome at one point before then. I have been moderately/severly affected but have had no major problems since about 25. I spent most of my childhood in braces to prevent hyperextension and joint damage. I have a high tolerance for pain and have gotten mostly used to living with it on a daily basis. We think I got it from my mom but she has never been diagnosed. She does now have lupus and fibromyalgia. My older brother is also thought to have a mild case of it since he is quite hypermobile.

Neither of my children show any real signs of it. My oldest ds has gross and fine motor delays but they are thought to be due to his pdd-nos. My youngest is the only one we are slightly worried about. He had a very funny crawl and one of his legs was turn out a bit. It has turned in since he has started to walk.

I was very worried about having kids with my diagnosis. I was told by several people to not have kids for both my own health and so they wouldn't have to deal with this. My heart valves did suffer more damage from my pregnancies and I did have some problems with my heart towards the end of my last pregnancy. I really don't think my body could handle another pregnancy. Overall, I am very happy I had children and have never second thought my decision(even if they both end up with EDS).

Misty, mama to my nurslings William(11/4/02) and Parker(7/13/04).
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#12 of 23 Old 01-20-2007, 12:31 AM
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Holy smokes- for a rare disease, what are the odds they'd be so many here! Thanks for all the info on it. When I first looked at the pictures I thought cool and then realized how bad it is for the body to be able to do that. Pull up a chair and make your self at home. This just might be the nicest place of all on mdc
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#13 of 23 Old 01-20-2007, 10:00 AM
 
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Pikku, might be worth checking out Hyper Mobilty Syndrome at www.hypermobility.org
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#14 of 23 Old 01-20-2007, 10:12 AM
 
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During sports etc everyone used to think it was amazing just how bendy I was..... If I knew how much pain I would be in now I would have said something. I have probleems with most joints, my jaw and ribs sublux, I scar terribbly etc.... Unfotunutely I also have fibromyalgia to go with it which also causes muscle pain and fatigue......... It would seem quite a few people with HMS and EDS also suffer from FMS and CFS (Chronic Fatige Syndrome) and also IBS.......

Total bummer but lifee can still be beautiful!!!!!!!
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#15 of 23 Old 01-20-2007, 03:23 PM
 
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Tireesix - thanks for the link! I looked through the website and most importantly at the treatments. I was thinking about taking up either Tai Chi or Yoga and thought Yoga would be better for the muscle stretching and relaxing, and they suggest it. I was also interested to read about muscle spasm, restless legs, and cramping that goes along with it, which I also have often very severely in my hips, calves, and toes. The suggestion to stay out of fixed positions for longer than 30 minutes is very important. If I stay in a position for longer, it's often very difficult to move afterwards - it's incredibly painful to move joints and muscles.

Thanks!

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#16 of 23 Old 09-14-2008, 07:52 PM
 
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Gonna give this thread a I'm really interested in finding out more about EDS and other connective tissue disorders!

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#17 of 23 Old 09-14-2008, 08:34 PM
 
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Thanks for the bump! I started taking yoga two months ago, after a couple of months of really bad hip pain. Not only has the hip pain gone, but I'm having a much easier time with my muscles and joints! I'm just doing basic yoga so it's not very strenuous but there is a lot of stretching and holding.

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#18 of 23 Old 09-14-2008, 09:04 PM
 
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My sister has EDS, and I think I might, too. I've never had the hypermobility, but my scars are weird (I've had stitches) and I did have that placental abruption with Brendon (it's supposed to be common with EDS, according to my sister). They think my nephew has it, not sure about my niece. I haven't checked my kids, though nothing jumps out at me. They are only babies, though - Brendon's 2 and Hypatia is 10 months. (I almost typed two months. Now THAT would be gifted - two months old and pushing the stroller with mommy in the mall? Yikes!)
Both my kids are super strong, so maybe they got lucky.
My back is sore a lot. Now part (most?) of that is from co sleeping with a baby who hates it when I switch positions at night (which is partly her and partly because we BOTH sleep heavily, so when I DO wake up enough to move, she's ready to wake up enough for another nursing, which makes my moving pointless!) but I wonder.
Dh and I are DEFINITELY taking up yoga. We could use the exercise and the stretching. And we DEFINITELY need the strength and flexibility.
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#19 of 23 Old 09-14-2008, 09:38 PM
 
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Hey there, the reason i'm interested in EDS and other connective tissue disorders is i think my dp and maybe also our dd may have EDS or Marfans or something else like them. My dp has alot of the symptoms of Marfans and he is always dislocating his neck and lower back areas, or at least thats what he says, he pops in and out of place from just slighly moving the wrong way or turning over in bed. He also is tall and thin, much taller than his family and he has a curved spine and hunched shoulders, he's got loose joints. Our dd is very tall for her age, she is 3 and everyone thinks shes 5 or 6. She also has joints that pop alot and my other kids, who have different dads don't have this. Also i was wondering if connective tissue disorders run in families, because dp moms family as alot of people in it with Lupus.

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#20 of 23 Old 09-15-2008, 04:18 PM
 
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I think EDS is much more common than is shown in studies, but people are diagnosed with the symptoms instead or just live life with painful, loose joints. I'm very hypermobile, and may very well have EDS but I haven't pursued the dx yet. I have soo many of the symptoms, and it was suggested by a PT at one of my many visits for various injuries, sigh. My mother has Degenerative Joint Disease, early onset Osteoporosis and problems with her connective tissue so it all kinda fits together family-wise.

My kids... I have 2 daughters, 26 months and 6 weeks. The oldest is pretty much my clone, she already bruises easily and has some characteristics that make me think she's hypermobile. My youngest is a completely different body type and I don't get the EDS or hypermobile vibe from her, lol. Time will tell though, I suppose.

Liz, mommy to DD1 (June 2006) and DD2 (August 2008) :
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#21 of 23 Old 09-15-2008, 10:56 PM
 
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Quote:
Originally Posted by sunkissedmumma67 View Post
Hey there, the reason i'm interested in EDS and other connective tissue disorders is i think my dp and maybe also our dd may have EDS or Marfans or something else like them. My dp has alot of the symptoms of Marfans and he is always dislocating his neck and lower back areas, or at least thats what he says, he pops in and out of place from just slighly moving the wrong way or turning over in bed. He also is tall and thin, much taller than his family and he has a curved spine and hunched shoulders, he's got loose joints. Our dd is very tall for her age, she is 3 and everyone thinks shes 5 or 6. She also has joints that pop alot and my other kids, who have different dads don't have this. Also i was wondering if connective tissue disorders run in families, because dp moms family as alot of people in it with Lupus.
I was actualy thought to have Maran's first because of how tall I was(it's amazing how much height severe scoliosis an several major surgeries as a youngster can take away). Everyone I have met with Marfan's sound exactly like your dh. It's pretty serious because it can cause dissection of the aorta in many cases. I also think there are many more people around with EDS. I am pretty seriously affected and have been since birth(intestinal tear at a few days old). I'm lucky that I wasn't ever able to seriously destroy my joints. My mom has lupus and FMS also but has not been dx'ed with EDS. My ds2 who I think my have EDS has ben check repeatedly by my ped for loose joints. She says he doesn't have any and his clumsiness and such is due to the PDD.

Misty, mama to my nurslings William(11/4/02) and Parker(7/13/04).
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#22 of 23 Old 02-15-2016, 01:52 PM
 
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Joints Hypermobility. My story of recovery.

Hi!
I am familiar with these symptoms.
This is the connective tissue disease.
It is called “Joints Hypermobility”.
The joints sore, they become crunchy, soft tissue may ache…
The ligaments are stretched.
Cartilage tissue wears out fast.
I published treatment regimens.
There is information regarding alternative medicine preparations as well.
I’ll tell what can help you!
This is my story of recovery -
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#23 of 23 Old 02-15-2016, 01:54 PM
 
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The joints can be cured! Disc herniation being treated.

Hi
I am familiar with such symptoms.
I got arthrosis of the both knee joints.
The hyaline cartilage is worn out. It’s only 0.1 – 0.3 cm. thick.
The joints are crunchy, they hurt.
There are arthrosis treatment regimens.
The hyaline cartilage can be regenerated!

I can tell what will help you!
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