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Doctor insights on: Ehlers Danlos Syndrome

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Is it possible to have symptoms from several types of ehlers-danlos syndrome?

Usually - one type: There are a variety of types as you note and most of the time this is the benign hypermobility type. It is genetic and you may have relatives also wiht it. Each type can have a variety of manifesations and so people with the same type can have different symptoms. Exercise is an improtant stabilizer and you need to be doing this. ...Read more

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How does ehlers-danlos syndrome affect lifestyle?

How does ehlers-danlos syndrome affect lifestyle?

Skin and Joints: Affects mostly the skin and joints but also the cardio-vascular system (e.g. Heart and large vessels). ...Read more

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What are the symptoms of ehlers-danlos syndrome?

What are the symptoms of ehlers-danlos syndrome?

Disorder of collagen: Ehlers-danlos syndrome is a common disorder of collagen structure that causes easy bruising and poor wound healing. Patients with this conditions have a soft, velvety skin that is hyperelastic, joins that are lax and they have unusual scarring. There are 10 variants. The most serious form is associated with rupture of visceral organs. ...Read more

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How likely is ehlers-danlos syndrome if one parent has symptoms/signs?

How likely is ehlers-danlos syndrome if one parent has symptoms/signs?

From 0 to 50%: Ehlers-danlos syndrome (eds) is a group of inheritable disorders. There are two different inheritance patterns of eds, autosomal dominant and autosomal recessive. If you have the dominant type, there's a 50% risk of eds in your child. If you have the recessive type, eds can only occur if your partner also carries the recessive gene. A genetic counselor is needed to tell you your exact risk. ...Read more

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I was given a diagnosis of ehlers danlos syndrome? What are the treatment options for this?

Not many: There are no specific treatments. Options such as pain meds or splinting are reserved for severe cases. ...Read more

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I have just been diagnosed with ehlers-danlos syndrome (joint cartilage) so should I stop playing sports?

I have just been diagnosed with ehlers-danlos syndrome (joint cartilage) so should I stop playing sports?

Not completely.: Your condition also is associated with hypermobilty of tendons and ligaments. While i think you should avoid contact sports, impulsive sports (tennis, basketball), you can bike, swim, do resistance training and keep your health in the best it can be. ...Read more

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What are the tests for ehlers-danlos syndrome?

Usually none: The diagnosis is usually made on physical examination. Since it's not something that can be treated with a pill, there's seldom any need to find the exact gene responsible (and there are many different ones that can do it). For the very severe vascular form, a geneticist may confirm this, before or after birth. I know several docs with e-d. Good luck. ...Read more

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How can you tell if you have ehlers danlos syndrome?

How can you tell if you have ehlers danlos syndrome?

Hyperextensible skin: Most people with ehlers danlos syndrome have hyperexstensible skin. Requires evaluation by knowledgeable physician - eg - rheumatologist. ...Read more

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Has anyone heard of ehlers danlos syndrome causes?

Has anyone heard of ehlers danlos syndrome causes?

Genetics: Ehlers-danlos is a genetic condition. There are no other known causes. ...Read more

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Cispr can edit our geno dna. Does this mean they could cure ehlers danlos syndrome by editing the faulty collagen to normal? How amazing?

Cispr can edit our geno dna. Does this mean they could cure ehlers danlos syndrome by editing the faulty collagen to normal?  How amazing?

Gene therapy: Crispr (clustered regularly interspaced short palindromic repeats) is an an immune strategy that bacteria use to detect and chop up foreign dna. By introducing the enzymes responsible for this process into human cells, genetic engineering can be performed. Treating a disease using this technology will be quite challenging, but I have no doubt this will eventually make it into clinical trials. ...Read more

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Do we need to report ehlers-danlos syndrome as a long-term health condition, or does it go away after being treated? My teen is getting ready to go to college.

Do we need to report ehlers-danlos syndrome as a long-term health condition, or does it go away after being treated? My teen is getting ready to go to college.

Yes: If your kid has ED it does not go away. The variable expression of this connective tissue disorder means some are milder than others but the potential for health issues lasts a lifetime. A simple summary of how this disorder has effected your son should help any college health service know at what point to contact you or specialists. ...Read more

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Are there treatment guidelines for ehlers-danlos syndrome?

Treat symptoms: While there is no cure for this inherited disorder, it is worth determining which of the 6 types the affected person has. This may guide the needs for cardiac evaluation for valvular or vascular problems, eye exams for vision problem such as lens dislocation, or high-risk obstetric care. ...Read more

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What treatments for ehlers-danlos syndrome can I try at home?

What treatments for ehlers-danlos syndrome can I try at home?

None: There are several kinds of eh, er danlos and there is no alternative treatment. Evaluation of type and extent is necessary to monitor possible internal involvement in certain cases such as heart valve abnormalities. ...Read more

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How do people inherit ehlers-danlos syndrome, vascular type?

How do people inherit ehlers-danlos syndrome, vascular type?

Not well known: The inheritance pattern is variable. In the more common eds type3 (hypermobility type), the inheritance is autosomal dominant meaning 50% of offspring would be expected to have it. Rarer forms like the vascular type is less predictable. If you have a parent who died of aortic dissection, you should be checked yourself with an echocardiogram. ...Read more

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What re worst risks from ehlers-danlos syndrome?

What re worst risks from ehlers-danlos syndrome?

Bone abnormalities: Low bone density from eds can lead to problems healing fractures and have joint pain. Spine deformities such as kyphosis or scoliosis can also occur. Irritiable bowel syndrome and GI disturbances can also be problemmatic. Finally, nerve compression syndromes such as carpal tunnel can occur along with known skin conditions, and blood disorders. Check with your physician to discuss fully. ...Read more