Doctor insights on:
Genetic: The only common form of eds is type iii. This is because afflicted individuals rarely reach childhood; and, certainly not adulthood. Eds iii is an autosomally dominant gene which means that 50% of children of the affected person will have the disease; or each child has a 50% risk of developing the disease. ...Read more
Examples are: colonoscopy for colon polyp or cancer; mammograms for breast lesions or cancer; psa a blood test that could indicate enlargement of cancerous prostate tissue; blood sugar or hemoglobin a!c for diabetes. Many think that scanning the whole body will pick up a cancer--in all likelihood, it will not. There also is no good blood test, yet, ...Read more
Depends: Ehlers danlos is a family of disorders, which has 6 major and several minor types. Given the multiple genes involved, it can be inherited in both autosomal dominant and autosomal recessive patterns, and can even spring from a de novo mutation. Penetrance depends on the type of mutation, and can therefore not be reliably calculated without more information. ...Read more
Not: There are 7 forms of ehlers-danlos syndrome. None specifically affect valves. Type IV which is very rare causes fragile blood vessels which can rupture. Type iii is the commonest form and causes hypermobile joints ("double jointedness") and it is benign. My research revealed no "new valvular" form of eds. ...Read moreSee 1 more doctor answer
No: There's no such thing as a double joint. You can be extremely flexible, and folks with ehlers danlos often are incredibly flexible. This comes from laxity in the ligaments and connective tissues surrounding the joints. The joints themselves, where the bones meet, have the same number of connections as anyone else. ...Read more
Clinical diagnosis: The collagen diagnostic laboratory offers diagnostic testing for eds type IV (vascular eds), eds type vi (kyphoscoliotic eds) and eds vii (arthrochalasia). Testing for eds types i and ii (classical eds) is available elsewhere. There is presently no laboratory test available for individuals with the most common form of eds - eds type iii or hypermobility eds. It remains a clinical diagnosis.. ...Read more
See below:: Ehlers–danlos syndrome (eds) is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (type i or iii). Marfan's syndrome is a genetic disorder of the connective tissue. People with marfan's tend to be unusually tall, with long limbs and long, thin fingers. It is caused by defects in a gene called fibrillin-1. ...Read more
Complications : Eds is a process with a wide variation of expression. Some of the most worrisome problems relate to the heart & blood vessels.Leaky valves are somewhat minor compared to the possibility of a dissecting aneurysm in the large arteries of the body or those in the brain. Either could lead to death. ...Read more
I have pretty moderate hip pain when standing after sitting or laying. My brother has eds, could this be related? I'm 28 yrs old
I fit all of the criteria for hypermobile EDS but to date only dx widespread OA and FMS. Would it be worthwhile trying to get an official dx of EDS?
Hard to know: Here's a good place to start: http://www.ehlersdanlosnetwork.org/index.html There may be advice about possible research trials or treatment possibilities - but it's a mystery in many ways. There's a video you can link to from the site. Best wishes! ...Read more
Ischemic holter narrative - ST elevations & depressions (>2 mm, more than 1 min). H/O EDS. Should I be concerned this wasn't in report? No follow up?
Needs follow up: Can't tell, kindly follow up with whoever ordered the Holter study, or see your cardiologist/internist, can't advice out-of-context, good luck ...Read more
4 afriend shes in bad shape with vascular eds, in hosp.Dr said she needs to decide future/code status, she has the right at 20 to make own decision rite?
Yes: Very important - every adult needs to decide how he or she wants to leave this world (especially what he or she does not want done) before a severe event or illness happens. That means each adult should write his wishes down, give a copy to his doctor, and give another copy to a family member. Two forms are the advance directive and the polst (physician orders for life-sustaining treatment). ...Read moreSee 1 more doctor answer
EDS types: There are 6 major types of eds, they are inherited disorders marked by loose joints, hyper elastic skin that bruises easily, easily enlarged blood vessels. They are called types 1 through 6. A variety of genetic mutations cause problems with collagen, the material that provides strength to soft tissue structures and bone. Collagen typing and gene mutation testing can determine the eds type. ...Read moreSee 1 more doctor answer
EDS: Excessive daytime sleepiness is exactly that. People typically will be tired during the day, fall asleep easily during activities that they should not falls asleep and may have a hard time staying awake while driving. It is also the diagnosis we typically use for patients so that they can qualify for a sleep study when we have concerns about sleep apnea. Sleep studies can be $2-4k tests. ...Read moreSee 1 more doctor answer