Doctor insights on:
I Looked Up Ehler Danlos And Saw A Lot Of Things I Have How Can I Be Tested
First: The first step is a clinical history and physical examination. Most ehlers-danlos are diagnosed on this basis alone. Doctors who are most familiar with the syndrome are geneticists and rheumatologists. If you make an appointment with a doctor, ask first if he/she evaluates patients for this syndrome. ...Read more
Should I get tested for ehlers danlos syndrome if I have a majority of the symptoms and are in my early 20?
Depends: Specific tests for Ehler-Danlos are expensive and not readily available and there are more than one type. Management depends more on clinical findings than tests. Usually other family members are involved. That said, if there is a medical school or foundation near you that is involved in testing for studies, etc. ,go ahead. ...Read more
1 in 5,000: The incidence of EDS is estimated to occur in 1 person in 5,000. ...Read more
It's been suggested to me that I could have Ehlers-Danlos Syndrome. How do I check this? Also, should I think about having my daughter tested if +?
Learn and yes: Check out the following comprehensive and well written site: http://www.ednf.org/patient-support There are many forms of Ehlers Danlos Syndrome, some serious and others less so. Learn as much as you can about your family history and consider any symptoms you may have, then seek expert advice. ...Read moreSee 1 more doctor answer
I can pop my shoulders in and out of their sockets it's not painful, and I have lots of fainting episodes could I have ehlers danlos syndrome?
Possibly: Are you really loose-jointed or is it joint your shoulders? A rheumatologist should be able to answer your question. If eds is present, the fainting would be unrelated. ...Read more
Is their a gene specifically associated with the hypermobile form of ehleres- danlos syndrome? And is it one that is able to be tested ?
See geneticist!: Type 3: hypermobility form - ehlers-danlos is caused by an autosomal dominant or recessive mechanism. Mutations in either of two separate genes (which are also involved in vascular eds and tenascin-x deficiency eds, respectively) may lead to this variant. Tnxb sequencing or quantitative serum tenascin-x analysis or testing of eds-associated genes, especially col3a1can be done. ...Read moreSee 2 more doctor answers
I tried getting my dr to look into Ehlers-danlos, however he shut me down immediately though I know I have many symptoms. How can I get screened?
EDNF.org: Ehlers-Danlos syndrome, EDS, is a group of genetic connective tissue disorders that affect many body parts, such as skin, muscle, ligaments. It is not an easy diagnosis to make as there are many diff't types and it is not easily recognizable, so don't be discouraged! If you believe you have EDS, seek a second opinion. The Ehlers-Danlos National Foundation, EDNF.org, is a great resource for info. ...Read moreSee 2 more doctor answers
I have a rheumatologist. In Ontario Canada there are few rheumatologists that can even spell Ehlers Danlos syndrome. What kind of Dr should I look for?
A few different docs: Medical genetics physician may be helpful in diagnosis if there is concern about an EDS type other than type 3. A physical medicine and rehabilitation physician would be best and helping to coordinate a plan for functional recovery. A rheumatologist would be helpful to look for other causes of joint pain such as an inflammatory disorder. ...Read moreSee 2 more doctor answers
Am looking for any research on ehlers danlos type 3 and total joint replacements. Mother has had both shoulders replaced. I and my daughter have eds3?
Ehlers Danlos: Ehler danlos foundation."ednf is thrilled that researchmatch is creating a sub-registry for ehlers-danlos syndrome. This will help facilitate much needed research that will positively affect people living with eds, as well as their friends and families, and that's a big part of ednf's mission. Thank you, researchmatch." — sandy chack, board of directors chair, ehlers-danlos national foundation. To get involved and to find out about the latest research, please contact kathy edson-vanderbilt university, where i went to medical school.Her phone number is615–343–2571. Best wishes for a blessed holiday season. ...Read more
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