Doctor insights on:
Look kind of like eds pictures so should I be getting tested for brittle bone disease or something?
Yes get diagnose: What type of the disease you have and take all the precaution for it. ...Read more
The cranium or brain part of the skull is comprised of 8 different bones, and although these joints don't move like those in the extremities, there is slight movement which allows an infant's skull slight movement to enable birth and growth occurs at the margins to allow head symmetry. The margins or sutures generally fuse by 22-39 months. At times they can be prematurely ...Read more
I have EDS 3 (hypermobility) & often my wrist cracks (feels like tendon catches on bone) & hurts for days after. Is there a way to prevent/treat this?
Pain: Warm compress to affected joints may help with the pain. Splints from an occupational therapist can help with the loose joints of your wrists. Motrin or Aleve (naproxen) for the pain in loose joints. if not improved in 1 wk, appointment with physician and referral to rheumatologist for further management w/ possible x-rays or lab work ...Read more
I have ehlers danlos syndrome and was wondering if a bone marrow transplant can cure the defects that cause my improper collagen I have been in constant excruciating pain for 15 years and pain meds do not help much willing to do anything to feel better at
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
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
Why do people with eds have problems with anaethesia, I wake up early from general and local doesn't seem to work. Fentanyl. ?
EDS? Multiple defs.: EDS can be 'excessive daytime sleepiness', 'erectile dysfunction syndrome', etc. You need to define your problem. ...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 am a 43yo female with EDS. My sinus of valsalva has grown 6mm in 2yr 9mths. Was 34mm in Sept 2018. Is this worrying, even though still small?
See cardiologist: It is unclear what your CURRENT size is. But to try to answer your question, normal caliber of sinus of valsalva is less than 36mm in women. In EDS you are at higher risk of rupture, so any dilation needs to be monitored. You should have a cardiologist who is monitoring your cardiac function. Some data suggests possible surgical repair in patients with connective tissue disease at 45mm. ...Read more
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
There are a few categories that make up the conditions commonly thought of as "weak bones." osteoporosis is a bone quantity issue; it is very common in older populations. Osteomalacia is a bone quality issue; it may be due to dietary issues (e.g. Lack of vitamins and/or minerals), chronic disease (e.g. Chronic kidney disease) or genetic disease (e.g. Familial rickets). ...Read more
Bones that are too long can cause a visible or measureable length discrepancy or asymmetry when comparing the right and left upper and lower extremities. Leg length discrepancies are more commonly the source of clinical symptoms and are more perceivable by patients since the imbalance in height between sides can be detected with ...Read more