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Ehlers danlos syndrome
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How I Stopped Worrying About Ehlers-Danlos Syndrome and Started My Own Video ...
When I was around five, my dad realized that he had a rare genetic collagen disease called Ehlers-Danlos Syndrome, Hypermobility Type. Most people just call it EDS III—probably because nobody seems to know how to pronounce it. Worse, he realized that ...

Slaithwaite toddler Finley Green gets a Christmas Wish after 16 months in and ...
For Jennie and Jamie, of Slaithwaite, it's something for them to look forward to as all three of their children have Ehlers Danlos Syndrome, which means they are fed through a tube in their stomachs. Jennie said: “Finley was born five weeks early and ...

THE REAL-LIFE THUMBELINA
Dr Harbison believes that as well as RSS Amelie has Ehlers-Danlos syndrome, a lack of collagen in the connective tissues which makes it difficult for her bones to stay in place. Dr Harbison has warned that unless Amelie is given growth hormones she may ...

One Tulsa woman sees the true meaning of Christmas
She has Ehlers Danlos Syndrome, a rare condition that affects her joints, bruises her skin and damages blood vessels. Mazie told FOX23 she wasn't sure she'd actually get the books because she would have to pick it up at the hallmark store. ...

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Discussions

Ehlers danlos syndrome - contact lenses safe? by ypg Q: Yea, I have EDS (mild form), and I was just wondering if anyone ever had any issues with contact lenses?

A: i have EDS too! since you have the mildest type i'd be careful either way though. i didn't have a problem with them. try them while you are home so if something goes wrong you can be where you can get help. have someone with you too. be careful. p.s. one time my friend online who had EDS wore contact lenses and it got lost behind his eye. he had to get surgery to find it and remove it. this never happened to me but be safe. hope i helped!

I have Ehlers danlos syndrome, a connective tissue illness? by judee f Q: I have been to 4 states, e mialed several large clinics and gotten into a study, then had a sample sent to Dna lab. It came back inconcusive. All seem to think they are sure of one thing, I have connective tissue illness but some say Vascular E.D.S, others say , marfans, others none but from the surgery was caused by a car wreck that I'd had one year before. I had a complete dissecction of the main aorta, a root replacement, and then was re-opened and had a valve replacement. 11 hours of surgery, code blued once, 28 days in intensive care , in the heart ward. I am getting worst, I have located a doctor in Baltimore, Marilyn who is a specialist in Connective tissue illnesses. If you have any info for me, please ask. thanks judee

A: http://dailystrength.org/support/Skin_Hair/Ehlers-Danlos_Syndrome/ heres a community with the same thing u can chat with them here i just look this up to but i dont know if it will be any help http://www.maimonidesmed.org/body.cfm?id=6&action=detail&AEProductID=HW_Knowledgebase&AEArticleID=nord338theres numbers on the site. what u can do to find more info is use the search engines.good luck

Genotype of Ehlers-Danlos Syndrome? by UofA7 Q: I'm doing a project for my biology class and i was looking for the genotype of ehlers-danlos syndroem and i couldn't find a thing pertaining to it.. can someone help me..

A: www.genetests.org Ehlers-Danlos syndrome (EDS), classic type is a connective tissue disorder characterized by skin hyperextensibility, abnormal wound healing, and joint hypermobility. It includes two previously designated subtypes (EDS type I and EDS type II) that are now recognized to form a continuum of clinical findings. The skin is smooth, velvety to the touch, and hyperelastic; i.e., it extends easily and snaps back after release (unlike lax, redundant skin, as in cutis laxa). The skin is fragile, as manifested by splitting of the dermis following relatively minor trauma, especially over pressure points (knees, elbows) and areas prone to trauma (shins, forehead, chin). Wound healing is delayed, and stretching of scars after apparently successful primary wound healing is characteristic. Complications of joint hypermobility, such as dislocations of the shoulder, patella, digits, hip, radius, and clavicle, usually resolve spontaneously or are easily managed by the affected individual. Other features include hypotonia with delayed motor development, fatigue and muscle cramps, and easy bruising. Less common findings include mitral and tricuspid valve prolapse, aortic root dilatation, and spontaneous rupture of large arteries. The diagnosis of EDS, classic type is established by family history and clinical examination. Quantitative and qualitative studies of type V collagen chains are usually not useful in confirming a diagnosis. Approximately 50% of individuals with classic EDS have an identifiable mutation in COL5A1 or COL5A2, the genes encoding type V collagen. Sequence analysis of both genes and COL5A1 null allele testing are available on a clinical basis. Treatment of manifestations: Children with hypotonia and delayed motor development benefit from physiotherapy. Non-weight-bearing exercise promotes muscle strength and coordination. Anti-inflammatory drugs may alleviate joint pain. Those with hypotonia, joint instability, and chronic pain may need to adapt lifestyles accordingly. Dermal wounds are closed without tension, preferably in two layers. For other wounds, deep stitches are applied generously; cutaneous stitches are left in place twice as long as usual; and the borders of adjacent skin are carefully taped to prevent stretching of the scar. Cardiovascular problems are treated in a standard manner. Prevention of primary manifestations: Young children with skin fragility can wear pads or bandages over the forehead, knees, and shins to avoid skin tears. Older children can wear soccer pads or ski stockings with shin padding during activities. Ascorbic acid (vitamin C) may reduce bruising. Surveillance: yearly echocardiogram when aortic dilatation and/or mitral valve prolapse are present. Agents/circumstances to avoid: acetylsalicylate; sports that strain joints. EDS, classic type is inherited in an autosomal dominant manner. It is estimated that approximately 50% of affected individuals have inherited the disease-causing mutation from an affected parent, and approximately 50% of affected individuals have a de novo disease-causing mutation. Each child of an affected individual has a 50% chance of inheriting the mutation. Prenatal testing for pregnancies at increased risk may be possible for families in which the disease-causing mutation has been identified in an affected family member.

Okay, My friend has Ehlers-Danlos Syndrome type 3... needs a tooth removed or canaled, where do I go?? by Eclipse Q: It's an abscessed tooth....very badly.

A: His personal MD is the best person to get a dental referral from.... may need to have his dental treatment performed in a hospital setting, where he can be taken care of should an emergency arise... Best wishes to your friend!

Did Michael Jackson have Ehlers Danlos Syndrome? by straight forward answers! Q: ehlers danlos...hypermobility in joints to jallen - i ask for the same reason as you... the hypermobility, the suddend heart problems....and you using the word "fit" also brought up another point, if you look a the scenes w/him removing his shirt - he has NO muscle tone...yet another symptom

A: I was wondering that too after watching some of his "moves", and 50 seems so young for a heart attack for someone so fit. Why do you ask?

does the world's most flexible person suffer from Ehlers-danlos syndrome? by huskers_6 Q: does he or not?

A: I dont think so he is just very hypermoble

what gene is ehlers danlos syndrome type 3 located? by Q:

A: Trick question, unknown. Haploinsufficiency of tenascin X (encoded by the gene TNXB) has been associated with EDS, hypermobility type in a small subset of affected individuals.

URGENT! anyone any idea about how to treat cervical cancer in someone with vascular ehlers danlos syndrome? by Q: I SUFFER FROM VASCULAR EHLERS DANLOS SYNDROME AND ALSO HYPERMOBILE EDS...I am 43 and already extremely ill. I recently finally have been also diagnosed with early menopause and on top of all my many meds i have had no choice but to start HRT also.....I was just desperate. If that wasn't enough i have just been told that i have been found to have cervical cancer which has appearred rapidly. I am obviously deeply shocked and upset but know that i have to do the work as my Docs here simpy know nothing about EDS full stop and even though they can see how dreadfully immobile I am, and have also had a ruptured aorta and approx 7 other 'critical episodes'. I feel it's a miracle i am here at all but NEVER imagined the combination of cervical cancer with the EDS.... am so very scared of all the treatments and this is very urgent but feel my med team here keep making bad calls so would deeply appreciate ANY advice. Thank you so so much

A: You have to be lined up with any option, and to be confident in your Dr. for certain, so all I can give is educated advice, not a direct recommendation. But as educated advice, I would say get a complete hysterectomy. It is going to be your best bet to avoid long term troubles. The surgery needs to be well planned and work with a surgeon who is also well advised and prepared for your special circumstances.

How widespread is Ehlers-Danlos syndrome? by zoidsterr Q:

A: In the US, there's 1 case of EDS for every 5,000-10,000 people, according to the Ehlers-Danlos Foundation. Other sources say 1 in 400,000. Unfortunately, sometimes patient foundation tend to exaggerate figures. According to wrongdiagnosis.com, about 54,400 people are affected by Ehlers-Danlos in the US. According to an article from December 2005 on Medscape, the estimated overall prevalence of EDS is 1 in 5000 people, depending on type. It affects males and females of all racial and ethnic backgrounds equally. Classical-type EDS occurs in 1 in 10,000 to 1 in 20,000 infants; it is one of the more common forms.

Ehlers Danlos Syndrome pregnancy complications? by Sarah A Q: I am 39 weeks pregnant and so far have not experienced any complication with my pregnancy. I have type 2 EDS or classic type and i am very frustrated with the hospital i am at. At every appointment i seem to see a different doctor who ends up asking me more questions than answering mine! Is there any women who have EDS and can let me know how their births went and any post labour complications they experienced.

A: I have EDS-Classical as well as two beautiful children. I had complications with both, but it was not considered to be caused by EDS (I was diagnosed with EDS after my children were born). I had no post-labor complications. What I can tell you to expect is that you will be sore and tired. This is considered normal, but it might extend for more than the typical 6 weeks. You might also be shaky and unstable in your joints for a while.

My sister recently got diagnosed with ehlers danlos syndrome. Anyone else have it that could explain it to me? by QweenB Q: thanks... im in 7th grade and if you could not be so scientific id appriciate it. my sister has all kinds of health problems, from hearing loss and back and joint pain to an allergy to wheat.... Is this normal for eds???

A: What is EDS? Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms. Each type of EDS is a distinct disorder that "runs true" in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS http://www.ednf.org/index.php?option=com_deeppockets&task=catShow&id=2&Itemid=88888965/

Has anyone heard of Ehlers Danlos Syndrome i am trying to raise awareness in anyway i can any ideas.? by Q: Ehlers Danlos Syndrome is a connective tissue disorder that comes with many other medical problems and chronic pain can anyone help me get some awareness out there not many people have heard of it including alot of doctors this is a link to help understand more of what it is http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002439/ i have already contacted ednf and they are for awareness i am trying to go beyond that

A: ednf.org maybe you should contact them and as them a good way to do that.

URGENT !! ..Vascular Ehlers Danlos Syndrome with Cervical Cancer !!!!? by Q: I SUFFER FROM VASCULAR EHLERS DANLOS SYNDROME AND ALSO HYPERMOBILE EDS...I am 43 and already extremely ill. I recently finally have been also diagnosed with early menopause and on top of all my many meds i have had no choice but to start HRT also.....I was just desperate. If that wasn't enough i have just been told that i have been found to have cervical cancer which has appearred rapidly. I am obviously deeply shocked and upset but know that i have to do the work as my Docs here simpy know nothing about EDS full stop and even though they can see how dreadfully immobile I am, and have also had a ruptured aorta and approx 7 other 'critical episodes'. I feel it's a miracle i am here at all but NEVER imagined the combination of cervical cancer with the EDS.... am so very scared of all the treatments and this is very urgent but feel my med team here keep making bad calls so would deeply appreciate ANY advice. Thank you so so much

A: That 's a lot of stuff to deal with. Maybe you can get some advice from one of the EDS support groups? You might also consider having one of your docs give you a referral to the Mayo Clinic or similar center that deals with complex situations such as yours. The Mayo clinic has a team that treats cervical cancer and another team that treats EDS. The downside is that the clinics are located in Arizona, Minnosota, and Florida.

do I have ehlers-danlos syndrome? by purplebutterfly283 Q: My physio said I have a heriditary illness to do with being double jointed. When I looked this up there was a link to ehlers-danlos syndrome. The symptoms I have are in line with this condition. http://en.wikipedia.org/wiki/Hypermobility Out of the symptoms listed there. I have had joint instability, internal bruising sometimes, whiplash, shoulder dislocations, a thyroid problem, a stomach ulcer, fallen arches, knee problems, panic attacks, internal bruising, headaches, carpel tunnel syndrome and palpitations. She just said double jointed syndrome, so do I have this other syndrome too or instead? or what else could it be?

A: ot.her then the double jointedness you don't fit into the Classic Type 3 EDS, but as they LOVE to change the different symptoms for the other 5 or so types I don't want to say no. I want you to call Cindy Lauren at the Ehlers Danlos headquarters, on Wilshire Blvd, in LA. I don't have the phone number right here as I just moved and am in total disarray. You may tell her that Deborah in NYC told you to call. She will be able to talk to you, if she is around, and if not, at least one of the people there will be able to send you all the material on each one of the types and the symptoms and you can see if you fit in anywhere. If you believe you do, please make an appointment with a Rhumetologist and a neurologist in your area to start talking to them about what can be done to keep the disease under control as you get older

Do I have Ehlers-Danlos Syndrome? by Q: My friend Lydia did a presentation on this disease last week in biology, and it got me thinking. So first off, I'm going to start back when this all started. Years ago when I was around 11 or so (im 15), I started having major hip problems. To the point that I couldn't walk from point A to point B without falling. My doctor sent me to physical therapy, and they sugested dance. Maybe doing something fun like that would have two purposes: I might fix this problem, and it woudn't be as borin as physical therapy. So I did dance, and for the most part I was feeling a little better. So my doctor was like, "okay let's move on". And it started up again. Around the end of August and beginning of September I was in computer apps and I had extreme pain in my right hip. I could barely walk. I texted my mom to come pick me up, and she took me to the doctor. He scheduled an x-ray and it came back fine. A couple weeks later I was in the ER for horrible pain in my hip, and they prescribed me muscle relaxers, and a high dose of ibuprofen. So I went back to my doctor and he took me out of all physical activity. Everything seemed to settle down, and I was fine, until about 3 weeks ago. It came back. I was watching the movie Hoover at the pre-screening and my legs and hips (both, not just the right) were in excruciating pain! I went to the ER and they gave me a pain med, and said I need to get a referral from my doctor to go see a neurologist. So I went back to my doctor and he said he wants to try physical therapy first, and then if it doesnt work we will try an MRI, and if that doesnt show anything then the neurologist. So I was talking to my physical therapist and I said I had the same symptoms of my friend who has Ehler-Danlos Syndrome. And she said she will research it somemore and then see if that could be what's wrong. Here are the symptoms I have, and the things I can do. (im hyperflexible) -I have small blood vessels (hard to draw blood) -Stretchy slack skin -I can lock my knees past the normal point -I can twist both my wrist and foot to face the other way -I have a "double-jointed" thumb -The tip of my finger can bend down straight without my finger bending -Chronic fatigue or tiredness -Reflux -Hip and joint problems -Flat feet -Weakness/clumsiness -Soft skin, and easy bruising -Lack of core stability, leads to weak ankles, hips and knees -Coldness and extremities in the feet -Loss of feeling in legs -Pain and pins and needles in my legs NOTE: Since I have weak ankles, I have dislocated my ankle many times. I will be running and it will just give out and I find myself face first on the ground. Does this sound like Ehlers-Danlos Syndrome? Do they have cures for this? My mom is now all freaked out because of the vascular type. Wouldn't they know already if I had vascular type? Please help as best as you can. Thank you in advance.

A: Although I have no way of knowing whether or not you have EDS, I do recommend correcting your flat feet. It would properly align your lower extremities and prevent future injuries. Contact me if you wish to learn various simple exercises which will correct your condition.

hypermobility/ehlers-danlos syndrome? by Q: ok so i have really flexible and also double jointed fingers i can also turn my feet the other way, put my foot behind my head i can turn my elbow the other way and i can turn my ankle inwards ive been reading about different things and i seem to relate to the disorders (or whatever you want to call them) above i was just wondering if anyone could tell me abit about it and does anything i can do sound like it? also one of my family members told me to read a story about a girl in a magazine and she had ehlers-danlos syndrome and it sounded similar to me but i have no idea things i have listed is not all of what i can do either..

A: I was recently diagnosed myself. You really need to see a doctor with experience in connective tissue disorders. I think most people recommend rheumatologists, geneticists, bone/joint specialists, and dermatologists. Is your skin very stretchy? Do you bruise or does your skin tear easily? Ever had surgical complications, such as wounds tearing away from the sutures? To receive a diagnosis, you need to have 3 of the 4 following major criteria: abnormally stretchy skin, a score of 5 or more on the Beighton Scale for Hypermobility, abnormal, weak scarring "cigarette paper scars", or a positive family history. This is for the classical form of Ehlers Danlos (one of the most common, and there are 10 or so forms in varying rareness). For the Hypermobility form, you need at least 3 of the following: 5 or more on the Beighton Scale, soft or velvety skin with only slight stretchiness, absence of skin or tissue fragility, which can be more indicative of other forms of EDS, molluscoid pseudotumors (small, benign fibrous nodules under the skin, usually in pressure point areas like knees and elbows), surgical complications such as sutures pulling away. Those are the most common forms of EDS. The 3rd most common is Vascular EDS and it can have serious complications. If you have a family history of cardiac abnormalities especially mitral valve prolapse, or any other sort of organ prolapse or rupture, it's pretty important that you bring up your suspicions to a doctor who can help you rule out or confirm a diagnosis. GL!

Ehlers Danlos Syndrome? by Q: I have Ehlers Danlos Syndrome it causes me to have weak joints so i cant participate in school sports which i love causes me to be in constant pain and I've analyzed my personaility because i want to be a psychologist and i have realized that it causes me to be very insecure, untrusting, have a need for hugs and affection which causes warmth which helps with the pain, i have also noticed that i try to mask the pain i feel daily simply because i am so insecure and fear what others would think of me it also makes it very hard to think so im keeping about a 80 average at the moment.... this was simply for venting and needing someone to share with :/

A: You are definitely not alone. I'm not sure how old you are or where you are living, but I am a mother of 2 teenagers and all 3 of us have EDS hypermobile type. My daughter is always looking to chat with other teenagers in the same situation. There is a lot of information out there that can also help, Yahoo Groups has a couple for EDS and there is also the national foundation, ednf.org. Feel free to contact me if you would like some one to talk to. :)

Can Ehlers Danlos Syndrome cause heavy periods? by SMURF :) Q: I'm 16 and have Ehlers Danlos Syndrome. I'm underweight - I'm 5"6 and weight 6 stone 11. I started my periods last year, and they are always, without fail, really really really heavy. It completely wrecks my week or two when I'm on my period. It's all I think about. I use a sanitary towel because I can't get to grips with using tampons yet. Basically, this is what I was thinking: Ehlers Danlos causes me to bleed alot alot alot from just the smallest of cuts, and once somewhere starts bleeding, it just won't stop! So I was thinking, could this be related to my heavy periods? Or does this make no sense at all because periods have nothing to do with lack of collagen, it's all just about your ovaries and stuff ? Adverts lie - there's an advert that says 'Have a happy period' - what's one of those?! I really hope someone could help! Thankyou! :)

A: Hi there - head over to the Ehlers Danlos National Foundation. They have some online info and also a paid member forum. The forum also has a Teens With EDS. www.ednf.org Hope this helps!

Ehlers-Danlos Syndrome? Or something different? by Q: I was randomly browsing sites online a week or so ago, and I came across a story where a woman, as a secondary result of another medical problem (excess skin after her pregnancy), was diagnosed with Ehlers-Danlos Syndrome. I was intrigued, and researched it and was slightly worried.... My symptoms that match the descriptions I read - firstly: 1) I have a very high, narrow, arched palate and had a crowded mouth until I had dental intervention. My palate is still arched, although braces did help. 2) I'm flexible. I can do the splits. I can (almost) get my leg behind my leg; I think if I was slimmer, I'd be able to. My fingers bend the complete opposite way at the middle joint.... I don't even have to manually pull my finger forwards. My knees also do this. I can turn my foot so that it faces the opposite direction to the other. I can pick up things (whether it be large or tiny) with my toes, and bring my foot up to chest level to retrieve it. 3) My skin scars terribly. I'm COVERED in lurid, purple/pink scars that are rough looking but feel relatively smooth. I'm covered in bruises at the moment and I've not been partaking in anything rough. I can pull my skin far away from my body at my ankles, armpits, upper legs and neck. 4) Terrible pins and needles! Peripheral neuropathy, is that what it's called? My limbs randomly go dead, or stricken with pins and needles. Diabetes test proved negative. 5) Irritable Bowel Syndrome. 6) I suffered with crippling, dehabilitating migranes as a young child. I was hospitablised with them, but a root cause was never determined. I still, rarely, suffer with them, but not as bad as when I was growing my fastest. 7) I'm 6 foot tall and still growing. 8) Extreme cold intolerance in my hands and feet. 9) Joint problems!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! My knees have always been known to randomly give way, I've sprained my ankes and wrists at least three times each, my ribs are very sore and I can't sleep on my side or front AND even stranger: I start the day at 6 foot. Throughout the day, if active, I shrink to 5 foot 8 inches, and get AWFUL backache. Is this possibly a symptom? However, I do wonder - are sufferers of this mainly very thin? Because I'm classed as overweight. Or could that just be because I also suffer from Polycystic Ovary Syndrome? My main question is, should I pursue this with my doctor? Or are these symptoms something less worrying.... or even strange little quirks of mine? Serious, informed answers only please.

A: >My main question is, should I pursue this with my doctor? Yes, yes you should. Whenever you have serious concerns--and it seems so based on the fact that you can list these things easily--you should always go to the doctor. Perhaps you'll be told it's nothing, but perhaps you won't. Is it worth the hour's convenience of skipping making an appointment really worth all the time you'll spend worrying over it? Having concerns about your health and not going to see the doctor is like gambling with your health. You've only got one body; is it worth it to ignore it when something is going wrong? You don't get a replacement if the one you've got wears out. Please, go see your doctor and get a professional answer. Don't wait.

Ehlers danlos syndrome complications? by Wasabi Q: On april 3rd, I was diagnosed as having ehlers danlos syndrome, classical type. I was having symptoms ranging from gastrointestinal complaints, urinary complaints, muscle aches, fatigue, etc... Anyway, my question is, can ehlers danlos affect your urinary tract? Because, I get symptoms similar to a uti off and on. Like burning/stinging whenever I urinate, and an increased frequency/urgency. Like I said, this happens off and on/intermittent. I had a urine sample done, but they couldn't find anything. I also have fatty stools, constipation, diarrhea, mucus, intermittent abdominal cramps, clothes are slightly looser (but the scale says I weigh the same), smallish potbelly (have had one since I was little), rotten egg burps, vomiting eipsode and dizzy spells (have had these since I was little too), low blood pressure, intermittent joint and body aches, intermittent fatigue, etc...My celiac levels were slightly elevated as was my WBC count. I have an appt with a G.I. doc on 4/24. I also get horrible acid reflux constantly, and when I do, I also get this nasty gurgling sound in my throat. It's so weird! He wanted me to have an endoscopy and a colonoscopy, but I'm paranoid about the tools being unsterilized. Anyway, my regular doctor (who is also a geneticist), who also diagnosed me, also wants me to have an x-ray done of my cervical, lumbar, and thoracic spine and a gastric emptying scan because she suspects degenerative disc disease and gastroparesis. My G.I. doctor doesn't really suspect celiac since the levels weren't extremely high or anything, but he wants to have an endoscopy done done just to make sure. Question: Can EDS cause all these symptoms? Or do you think there's something else going on too, like celiac or DDD? Should I get an endoscopy done? Has anyone on here ever caught anything from unsterilized endoscopic tools? Sorry for all the questions. Thanks for the help! I heard somewhere that a high white blood cell count can also come frome tissue damage. Well, EDS involves tissue, so, I don't know. It wasn't very high though. Something like 10.9 Thanks again!

A: At least 9 different types of EDS have been identified; symptoms vary depending on which type of EDS a person has. The most common forms of Ehlers-Danlos syndrome (EDS Type I and II) are characterized by one or more of the following features: * skin problems * soft velvet-like skin * fragile skin that bruises or tears easily * stretchy rubber band-like skin * easy or severe bruising * poor and slow wound healing (usually taking weeks to months to heal) * small harmless bumps under the skin * joint problems * loose unstable joints causing frequent dislocations usually occurring in the shoulders, knees, hips, collar bone or jaw * double jointedness (hyper extensible joints), extreme in some cases * joint pain from frequent dislocation * eye problems * nearsightedness, occasionally extreme Less common symptoms that may occur in the more rare forms of EDS include: * gum disease (EDS) VIII) * curvature of the spine (EDS VI) * problems with blood clotting (EDS X) * more serious eye conditions (EDS VI) * pulmonary (lung) problems (EDS IV) * weak blood vessels, intestines or uterus that may lead to more serious complications (EDS IV) If you have constant reflux you SHOULD get an endoscopy done. You could have some damage to your esophagus, or to your lower esophageal sphincter.

People with hypermobility syndrome / ehlers-danlos syndrome? by Preggers Brit Q: How do you stop the pain setting into your joints so badly in the cold weather? Desperate for tips. Central heating makes no difference and a bath is only temporary relief and we're forecast a chilly winter here in the UK *sob* All tips and tricks gratefully received <3

A: Sorry i dont know of any ways i have RSD and EDS and uhh i hate when it gets cold just because of how painful my body gets. :( If you find a way or get any ideas can you email me with what you found :) [email protected]

Do think I have Ehlers-Danlos Syndrome? by Q: Ehlers-Danlos Syndrome is a skin disease where skin may get stretchy. The most common area to get that is in the chest and neck. My skin can stretch from around 5-6 cm and Im only 12. The world record holder is 15 cm and he's around a young adult. So please, im wondering if I have it or not. Also, don't tell me to go see a doctor to get me diagnosed, I want to know what you think.

A: Hey, my mum has Ehleres-Danlos Syndrome. I'm no expert on the condition but I'll tell you a little about her symptoms then maybe you can draw parallels and come to your own conclusion. She does have elastic skin, though it isn't too excessive. What is more apparent is that the skin on the back of her hands feels very thin. She also bruises easily and her skin doesn't heal too well which often complicates surgical procedures. She is very hypermobile too. Her arms almost look like they are broken when she fully extends them and her knees dislocate and cause her excruciating pain on a regular basis. She has recently had knee replacement surgery, though, it doesn't look like it's been successful , but only time will tell. This was a concern the surgeon had previous to the operation on account of her suffering Ehlers-Danlos but we didn't have any other option. Those are the main things. I hope you find them useful.

EHLERS-DANLOS HYPERMOBILITY SYNDROME/ HYPERMOBILITY SYNDRoME!? by Neener Q: So tonight I was talking to a friend who has a severe form of Ehlers-Danlos Syndrome....and she saw the way that my joints are, and how "flexible" I am and how strechy my skin is. So she commented on the possibility of me being a hypermobile. I went to the HMS website and got 9/9 on the beighton[sp?] test. [that consisted of me seeing if I could extend my elbows and knees beyond what was considered normal, pulling my fingers back, touching the floor with my palms [without bending my knees], etc...] 5 out of 7 days of the week, I experience joint pain [in my back, knees, fingers] I just told my aunt [who is a nurse] about it, and she shrugged it off saying "All the women in our family can do that". Which is funny because It's HEREDITARY. so...any doctors out there that can confirm or dismiss my suspicions? what should I do?

A: Glad to report I am not a Doctor. I have Rheumatoid Arthritis and at the young age of 49 have just been told I have Hypermobility, but late than never I suppose. I guess the same rules apply and that is joint protection. In other words if you have this flexibility do not over extend the joints otherwise you will get painful joints. If you are worried then consult a Doctor.

Ehlers Danlos Syndrome and tattoos? by heatherdee228 Q: I have a rare joint condition called Ehlers Danlos Syndrome http://www.medicinenet.com/ehlers-danlos_syndrome/article.htm#1whatis, my condition causes poor healing and things along this line. I am turning 18 next month and really want to get a tattoo but I am not sure of the complications with EDS. If anyone knows anything about EDS and tattoos could you please give me some pointers and suggestions about things I can expect when getting a tattoo and if it is a good idea or not for people who have Ehlers Danlos. Thanks so much!

A: You should be fine. Tattooing doesn't do that much damage.

Ehlers-Danlos Syndrome? by camdensmommy07 Q: I have just been diagnosed with ehlers-danlos syndrome, but they did not really explain it to me that much. It's the one that affects the joints. I am wondering how it affects daily life, anyway to treat it, and why should I get the genetic tests done?

A: Well, it generally depends on the type you have. I have Ehlers-Danlos Syndrome Hypermobility Type. With me, I am in almost constant pain. How old are you? I'm almost seventeen. Hmm, well it's affects on daily life is mostly with pain. Anyone who doesnt have EDS cant really understand that part of it. On any given day, things can hurt intensely, or you can dislocate any joint. I would suggest getting braces to wear on joints when they dislocate, as they hold them in place well. I have bad times sometimes, periods where I can't walk at all for about 3 weeks at a time. I have a wheelchair for this. Mostly for treatment, you discover what works. If you dont bruise too easily (i do!) then you might want to have deep tissue massages if your back hurts. I do physical therapy, but i would suggest looking for hydrotherapy,where you swim in a heated pool and do weightless exercises. It feels amazing! I'm on different medications for this too, like amitriptilyn. It actually works somewhat well, but the best way to control any type of pain is 800mg of motrin, trust me. It has anti-inflammatory drugs that can relieve joint pain. I'm not especially sure about the genetic testing,but I've had it done too. It's mostly to assess the risk of passing it on to any children you'll have. Also, if you're looking for anyone to talk to, I would suggest joining EDNF.org, where you meet other people who have this disease. Also, feel free to ask me for my email address or AIM, because i can tell you alot about it if you want to know! Hope i helped, and I'm sorry that you have to suffer from this as well!

Genetic reason for Ehlers-Danlos Syndrome? by thecreativeone121 Q: I'm required to study the Ehlers-Danlos Syndrome and I need to list both the genetic reason for it, and the cause of disease. Well I know the cause is because of the disruption of production of collagen, but what would be the genetic reason?

A: http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome It tells you the exact gene and what protein/enzyme is affected in each type.

Ehlers-Danlos syndrome? by ssj_flip_boi Q: I have been experiencing pains in my joints(elbows, wrists, knees)and i am beggining worry about my situation. My wrists always 'pop' when I roll them out(my doctor said that this is just because of the flexibility in my wrists) and sometimes it feels like i have hyperextended my eblows and the pain is rather awful. I am currently taking boxing and I do not want to give that up at all. I have not been taking vitamins or anything like that yet, but I am going to start right away. Does this sound like Ehlers-Danlos syndrome?

A: no i dont think so cause poeple with this syndrome have abnormal function of the plateltes inthere blood so they bleed easily ,,

I am so worried about Ehlers-Danlos Syndrome. I lost my baby to uterine rupture 8 mos back. Do I have this? by S123 Q: Please help me. I read online that uterine rupture can be a strong symptom. Apart from that I have very soft skin. I am so worried. My parents or anyone in family doesnt have this. I am pretty healthy and dont bruise easily and very mild translucent skin

A: I'm sorry that you lost your baby. But it could have been other things that caused it. There are various kinds of EDS (I have it myself) so the symptoms really do vary between the types. I highly doubt you have it, but it never hurts to check out your symptoms. Google it, but don't worry if you do find that you have symptoms, because self diagnosing never helps. It's relatively rare, so your odds are pretty low.

Does anyone else have Ehlers-Danlos Syndrome? What do you do for the pain once Vicodin no longer helps? by Q:

A: Ehlers-Danlos Syndrome (EDS) (also known as "Cutis hyperelastica") is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (a protein in connective tissue). Connective tissue helps support the skin, muscles, ligaments and organs of the body. Depending on the individual mutation, the severity of the syndrome can vary from mild to life-threatening. There is no known cure. Treatment is supportive. Pain relief if it is narcotics your on and Vicodin does NOT work there are still a few meds you could try before being placed on the big guns like Morphine and Diluadid and Fenantyl. These includre; Burprenorphine Patches that are Slow release 1 patch per week giving 10,20 or 30mcg/ per hour release, these are usually the least addictive or the high end Opiates. They are stronger than Methadone and usually used to get people off Opiates but are used for pain relief, I would suggest trying this before you move onto Oxycontin. Lets face it pills are annoying at times, I would also use Deep Heat because this is affective for musclular pains. It is a gel and it is avaliable without prescription. I used to use Buprenorphine 20mcg/per hour patches, but here in the UK London, Dr's are unsympathetic towards chronic pain patients and this never worked for me personally but it does for many people, my Dr refuses to give me stronger pain killers citing my age as an excuse im 24 on the 18th of this month. Plus Hydorocodone (Vicodin/ Lortab) is NEVER used in the UK.

Ehlers Danlos syndrome and pregnancy? by Axelover caps Q: My husband and I have been off birth control for several years and I still havn't gotten pregnant, we havn't gotten obsessive but the clock is ticking. My physical therapist wants me to get genetic counciling because she thinks that I have Ehlers Danlos Syndrome.Are my periods heavy, I don't know. Am I 26 and have had surgery on both thumbs? Yes. Dream lost?

A: Women with EDS can still have children, but there's a risk of passing it on, which is why genetic counseling is recommended. Before worrying, though, you should first see whether or not you have this.

Can you donate bone marrow if you have ehlers-danlos syndrome? by ♥AWC rLovEution Q:

A: I would imagine that you could. I have a severe case of Hypermobility EDS and they never told me I couldn't. Basically EDS is in the connective tissue of the body, not the bones, and there is no way to "catch" EDS, it's inherited only so you can't give it to anyone. Your bones might be a bit more fragile but they should be able to handle a bone marrow extraction. All in all I see no reason why you couldn't.

Are there any adults with EDS? (Ehlers danlos Syndrome)? ? by mainemode Q: How old were you when you were diagnosed, how are you today? I have a toddler with a possible type of EDS, awaiting diagnosis. Thank you.

A: this is the wikipedia link with details of this disease http://en.wikipedia.org/wiki/Ehlers-Danlos_syndrome ,but sure u can have it as an adult. well read the symptoms in the link and go to the doc immediately to see if he is ok.

I have Ehlers-Danlos Syndrome. Can I get a tattoo? by turtlegrrl Q: I have a condition called Ehlers-Danlos Syndrome. I have the hypermobile type primarily (joint dislocation) but I have experienced some of the Classic Type (Skin tearing, scar's stretching and paper thin skin). My skin does rip off with a band-aid. I use a Fentanyl patch to deliver pain medication through my skin & I've noticed when I remove it; it takes the skin with it (I have a covering to help keep my patch on & it adds to the surface area that's ripped off). I would like a tattoo, a small one, but I worry about this because I do bleed easily & I scar & bruise heavily. When I have bloodwork - it always bursts my veins (which is common whether needles are stuck in the veins or I bump something & they burst to make a nasty bruise). But I do fine with accupuncture (I love it in fact). Any thoughts on what I should do besides using permanent marker? :). Pain isn't an issue, I had some cavaties in my teeth & never felt them or the dentist scraping in them w/a pick due to my pain meds. Just a note, where I place my Fentanyl patch and where I plan to have the tattoo are entirely seperate places - my concern is all the problems I come into with EDS (easy bleeding, heavy scaring & bruising) and how it'll affect the look of the tattoo or should I just not bother and enjoy other people's tattoo from afar?

A: I see pain isn't your concern, but I am not sure if a tattoo is the best idea for you. They take a good couple of weeks to heal. They heal from the inside out, like a burn. I would deffinately talk to your doctor first before you meet with an artist. You would want your tattoo to heal properly so you can enjoy it, so just doublecheck with your doctor to make sure it's ok!

Does anyone know the difference between Ehlers-Danlos syndrome and Hypermobility? by Scream Bloody Gore anti jonas Q: And is exercise harmful to the joints and muscle or does it help? Recently diagnosed but my doctors don't know which one I should be classified as

A: Benign Hypermobility Syndrome is one of the names of Hypermobility Syndrome. Other names are double jointed or loose joints or hyperlaxivity. It is called benign in difference to the malign types like some of the Ehlers- Danlos syndromes with a lot of problems with internal organs and in difference to Marfansydrom, which people unrecognized often die off between 20 and 40 years old by an Aorta rupture. These people have a Hypermobility Syndrome too, but it is not called benign. So benign means that you normally gets as old as the average of people withoutbenign hypermobility syndrome.

Necessary precautions/lifestyle changes do i/employers need to make with Ehlers Danlos Syndrome and Arthritis? by ♥ Bekka ♥ Q: I have been told i have got Ehlers danlos Syndrome, (Kyphoscoliosis) a, serious connective tissue disorder, that is likely to leave me crippled, soon ish (Doctors words) aswell as Arthritis. It affects all my major joints, my entire spine, neck, both hips, knees and pain in toes. I'm a 21yr old F, just graduated. Want to work with kids. What necessary precautions can and employers need to make, or changes should i make to my life. Is there anything i can take/do for the pain. (I don't want pain killers, i really feel thats not the way to beat pain.) Does bracing help, if so what? What braces do i get for my knees, for my back, etc, etc? Please only answer if you can help and are serious, i don't want silly answers, this is serious, i am young and i want to live as happy a life as possible, working with and for other people. Thanks xxx

A: I do not have what you have but I face the same bleak future. I live everyday in constant pain but like you do not want to take pain medications that prevent me from doing what I like to do. I am faced with a future in a wheelchair also but I live my life to its fullest because who knows when I will be in a wheelchair and if I live my life focused on the bleakness of the situation then I am not having a quality of life so live life to its fullest and when it happens deal with it but don't let months or years pass you by waiting for the worst. I keep in my mind that one day I will be in a wheelchair so I chose to seek college and a career in something I can do in a wheelchair and so can you. I have a brace to support my body however there are good and bad to braces if you wear them the decrease the muscles you already have but if you don't wear them then you lose the extra support. At this point in my life I wear the brace when I need it but rarely is that the case. Pain medications I take the minimal amount because I want to live a quality of life(I also have a pain specialist to assist me with my pain you need to get one they understand your pain allot better and are better educated to help with you pain) I have one life to live so I am going to live it the best I can and so should you

I have ehlers danlos syndrome, i might be getting symptoms of a more serious type but im not sure, very scared? by Ben Gren Q: My elbow has been in a some pain when i bend it a certain way for the past few months and now my shoulder (tendon?) has been in some pain for no apparent reason. I work out almost every day in school but im just not sure why these things are effecting me?

A: I think you need to make an appointment to see your doctor if you think your condition is getting worse. Good Luck.

Ehlers-Danlos syndrome, he has it, i don't, whats the odds my baby will have it? by Allison H Q: I am 29 weeks pregnant, i didn't know at the time, but the jerk i was seeking that "knocked me up" had ehlers-danlos syndrome. I am now wandering if my daughter will be effected???

A: You picked him! You had unprotected sex with him! Deal with it. Ask your doctor or Google it.

Where and how is Ehlers-Danlos Syndrome painful? by Q: Does it hurt in anyway and what type of pain is it? I'd prefer if someone who either has this syndrome or is well acquainted with the syndrome to answer the question, so they can describe the type of pain. Like, burning, searing, prickling, ect.

A: I have EDS so I can answer for you :) It hurts pretty much everywhere, depending on which kind of EDS you have. I have hypermobility type so I have extremely flexibility. It's painful because the collagen in ligaments etc. doesn't work correctly so everything stretches too far. I get a lot of dislocations because my joints just can't hold themselves together properly, so that's a very common pain. The muscles also have to work harder to try and hold my body together, so I get a lot of muscle pain as well. The kind of pain is hard to describe, it really depends on why it hurts. But it's the typical kind of pain you'd get from a dislocation or muscle ache.

I need to know what type of syndrome this is, cause its not exactly ehlers-danlos syndrome? by Gao Ju Lin Q: I have very elastic skin, hyper-extensive joints, and stretching, but I can't dislocate my joints easily at all, and I can stretch beyond what most people can/ my skin collagen is very high, so I have very tough/strong skin but very elastic, and I don't bruise easily at all, so its like EDS but without the negatives so I dont know what I have?

A: You are just lucky? Ehlers-Danlos symptoms vary quite a bit, so you could just have a different subtype or expression. Be careful not to injure yourself.

Do you know anything about Ehlers Danlos syndrome and its sub-types? by Q: I have a form of EDS and would like to get a sense of the awareness level of the general public.

A: Yes, lots but I hadn't heard about it before my niece got diagnosed. There is a group of about 30 people in our localish area that get together that either have it or their children do (generally it's both). My niece has either type 1 or 2, I forget which but it's the type with both the skin and the hypermobility. I've been told I have hypermobility but it's hard to distinguish between EDS and just being hypermobile so I really don't know if I've got EDS type 3 (I think that's the hypermobile type) or not. Either way there are a lot of similarities. Most people know hypermobile people but refer to them as being 'double jointed' but what annoys me is when I say my knee troubles have been caused by the hypermobility (my knees go a bit backwards, despite all my muscle tone and my physio told be the hypermobility is the cause of the issue) some people will try and convince me that I'd just flexible and it isn't actually an issue at all. I guess I have to be thankful I don't have it as bad as some do (my niece gets tired very easily and because of that and her really delicate skin she doesn't get to participate in sports). I'm only 19 though so I'm concerned about the future (pain, arthritis, not carry babies to term, dislocation). Edit: Just going to add that about 6 months ago I had no idea that there was a reason I suck with fine motor skills and got in trouble for the way I held my flute and my pencil grip. I had no idea my knees went backwards at all and I thought everyone's thumb could touch their forearm. My boyfriend thought I was weak because I like to hold a saucepan with both hands just in case my wrist randomly gives way again.

Ehlers Danlos Syndrome and Heart transplants? by bevfortbragg Q: My brother was just told he needs a heart transplant! He is 45 years old and is very very week currently His heart ejection fraction rate is at 15% was 30% 3 months ago and at 65% one year ago. He also has Ehlers Danlos syndrome, connective tissue disorder. He was told if it was not for his pacemaker and difibulator he would not be alive! Trust me we are all scared to death. What I need to know is he a candidate for such a serious surgery considering he has Ehlers Danlos Syndrome. Please let me know what you know.

A: I have Ehlers-Danlos Syndrome, and I think he does need the surgery. There are alot types of EDS; one is heart related. What type of EDS does he have? There are issues with skin and surgery with EDS, just let the docs know he has than. And what is his problem with his heart? I also have a daughter with Congenital Heart Defects and has had two open heart surgerys and still needs one more this spring. I think that if the doctors are saying he needs it I would get it. They don't throw that word around lightly (transplant). And his ejection fraction rate is very low. It is scary and I have been thru alot since my daughter was born. Try to keep positive and pray! Miracles do happen! My daughter is one of them. I will be praying for him and you.

I have Ehlers-Danlos Syndrome. Which medicines should i talk to my doctor about, for my pain? by Stiner Q: Sometimes the pain in my joints is severe. I sometimes hurt so bad, i can not move. I have to find something appropriate to manage my pain. Any help would be appreciated.

A: I think it would be a good idea to ask your doctor which meds to consider rather than discuss ones not recommended to you by the medical professional who diagnoses you

I am 18 years old and I have Ehlers Danlos Syndrome,What do I need to know to keep my self healthy? by Hannah Q: I need to know what I need to do in order to keep myself healthy. I know exeriseing is one thing. I have a swimming pool so I was going to try swimming,But what else do I need to do? What is good for me to eat do etc. I need all the advise i can get!

A: Ehlers Danlos Syndrome will depend greatly on what classification (type) you have been given. Sounds like yours may be a "type 4," or "vascular." Usually there are support groups or information on this disease. You're likely seeing a specialist for this kind of matter, so let he/she guide you as to what you SHOULD or SHOULD NOT do. Best of luck!

Has anyone heard of Ehlers Danlos Syndrome? by Q: Has anyone heard of Ehlers Danlos Syndrome i am trying to raise awareness in anyway i can any ideas.?

A: Yes I have, I have it! Along with Reflex Sympathetic Dystrophy and POTS syndrome, which are both rare diseases. You can spread awareness on youtube by making a video and then post it on facebook and tell people to share it. If you wanna watch my video for RSD here it is, you can check out my other videos too! http://www.youtube.com/watch?v=m3PWek9XVhg

Is Ehlers Danlos syndrome associated with Sarcoidosis? by katty_175 Q: I would like to know if the two could be associated/related with eachother. Please and Thank You!

A: Not that I am aware of ... it is usually considered on the differential diagnosis of a specific subtype of EDS

Is it too risky for someone with Ehlers-Danlos Syndrome to have a child? by Danielle Q: My sister has Ehlers-Danlos syndrome type three, and it is a very severe case... She has always wanted to have children, and I'm wondering if she will ever be able to bear children on her own, or if she would have to adopt, or have me carry the child for her.

A: my wife has eds iii and we now have a 21day old wonderfully healthy sun. All i would say is seriously consider a c-section due to risk of prolapse and all sorts of nast stuffy if she had a naural birth (my wife had a c-section as highly recommended)

Who is aware of Ehlers Danlos Syndrome? by Q: This is a connective tissue disorder.There are different types of EDS. Vascular Ehlers Danlos Syndrome is the most severe type, resulting in early death. Many people have EDS and are never diagnosed. A skin biopsy is the way to test for EDS.May was Ehlers Danlos Awareness Month, yet the majority of people have never heard of this disorder. Tests, information and links are available.

A: I'm a doctor. I'm aware of Ehlers Danlos Syndrome (EDS). It's due to abnormalities in collagen. You say that "many people have EDS". The overall frequency of the condition in the UK is 1/150,000. The symptoms of the EDS type 1 can be pretty serious and if you have it you'll probably know. Other EDS types are milder and more difficult to diagnose. It's good that there is a EDS awareness month, but as with most diseases that are relatively rare, publicity is poor unless there is someone famous to promote it.

What is the cause of ehlers-danlos syndrome? by Q: Does anyone know the cause of ehlers-danlos syndrome? Like the molecular cause, I know it's because of a mutation of glycine to serine but could someone please elaborate? thanks!!

A: Mutations in the ADAMTS2, COL1A1, COL1A2, COL3A1, COL5A1, COL5A2, PLOD1, and TNXB genes cause Ehlers-Danlos syndrome. Some of these genes (COL1A1, COL1A2, COL3A1, COL5A1, and COL5A2) provide instructions for making proteins that are used to assemble different types of collagen. Collagens are molecules that give structure and strength to connective tissues throughout the body. Other genes (ADAMTS2, PLOD1, and TNXB) provide instructions for making proteins that process or interact with collagen. Mutations that cause the different forms of Ehlers-Danlos syndrome disrupt the structure, production, or processing of collagen, preventing these molecules from being assembled properly. These defects weaken connective tissues in the skin, bones, and other parts of the body, resulting in the characteristic features of this condition. The inheritance pattern of Ehlers-Danlos syndrome varies by type. The arthrochalasia, classic, hypermobility, and vascular forms of the disorder usually have an autosomal dominant pattern of inheritance. Autosomal dominant inheritance means that one copy of the altered gene in each cell is sufficient to cause the disorder. In some cases, an affected person inherits the mutation from one affected parent. Other cases result from new (sporadic) gene mutations. These cases occur in people with no history of the disorder in their family. The dermatosparaxis and kyphoscoliosis types of Ehlers-Danlos syndrome, and some cases of the classic and hypermobility forms, are inherited in an autosomal recessive pattern. In autosomal recessive inheritance, two copies of the gene in each cell are altered. Most often, the parents of an individual with an autosomal recessive disorder are carriers of one copy of the altered gene but do not show signs and symptoms of the disorder.

How likely is Ehlers-Danlos Syndrome if one parent has it? by Steve Q: I don't have Ehlers-Danlos Syndrome. My girlfriend does. If we ever do have children at all it's going to be far off in the future. I already wonder how good an idea it would be, though, because of her EDS. If we had a kid together instead of adopting how likely would it be to have EDS too? I know it's inheritable but not how inheritable it is.

A: Your girlfriend should speak to her geneticist. He/She will be able to identify how likely she is to pass it on. No one on here is going to be able to tell you exactly, but I would assume it'd be less than 50% as she would just be one of the parents. Good luck. ....

Can you have Ehlers-Danlos syndrome without a parent having it? by Q: Just curious if you can have Ehlers-Danlos syndrome without a history of it in your family. Can your parents be carriers and not exhibit the syndrome? Or is it that someone related to you must have it? Also- how severe do the loose joints have to be? Thanks!

A: The inheritance can be X-linked recessive, autosomal dominant, and autosomal recessive. One of your parents is a carrier for EDS, but doesn't display symptoms of any type of EDS. I am the first one in my family to present with the actual disease, so it isn't unheard of for someone to suddenly present with no prior family history. Joint looseness varies from type to type, but its a common thread to have joint looseness enough to allow for even partial dislocation. Keep in mind it isn't JUST the joints affected by EDS. There are other symptoms, too. I have type 3 and I suffer from partial to full dislocations of joints A LOT, as well as almost all of the other symptoms such as the scarring and even the prolapsed valve in my heart. The different are types 1, 2, 3, 4, 6, 7A, 7B, and 7C of EDS. 3 is hyper flexible and also the most common (with 1 in 10000-15000), 7A, B, and C are the least common (from 40 to even 10 known cases in the world) with very severe symptoms, C having the sagging and very very easily torn skin. If you have any cause for concern with having EDS, visit your general care physician, and if they don't have the answers, find a geneticist and have yourself tested and examined for it. I hope this helps you. Best of luck.

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