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How do I know if I have Ehlers Danlos?
What signs or symptoms may make you suspect you may have Ehlers Danlos. People who have experience in Ehlers Danlos offer advice of what things may make you suspicious and which doctor you should go to to receive treatment
There's a catch phrase in EDS: "If you can't connect the issues, think connective tissues!"
I will repeat what some websites say:"
Ehlers-danlos syndrome (eds) is a group of inherited disorders that weaken connective tissues. Connective tissues are proteins that support skin, bones, blood vessels and other organs. Eds usually affects your skin, joints and blood vessel walls. Symptoms include
loose joints
fragile, small blood vessels
abnormal scar formation and wound healing
soft, velvety, stretchy skin that bruises easily"
I will repeat what some websites say:"
Ehlers-danlos syndrome (eds) is a group of inherited disorders that weaken connective tissues. Connective tissues are proteins that support skin, bones, blood vessels and other organs. Eds usually affects your skin, joints and blood vessel walls. Symptoms include
loose joints
fragile, small blood vessels
abnormal scar formation and wound healing
soft, velvety, stretchy skin that bruises easily"
Posted May 25, 2017 by Maria 2051
By seeing a rheumatologist and a geneticist they will check you for eds with a series of tests
Posted May 27, 2017 by Jude 2050
Research symptoms and diagnosis criteria. If you suspect that you have it, go see a geneticist
Posted May 28, 2017 by Celi 2000
You have to be diagnosed, preferably by a geneticist, in a clinical setting.
Posted May 31, 2017 by KathrynOConnor 2200
If you suspect you have Ehlers Danlos talk to your doctor about it,
Posted Jun 4, 2017 by Richelle 1750
Some of the signs I experienced are;
Dislocations
velvety skin
Flexible joints
Dislocations
velvety skin
Flexible joints
Posted Sep 27, 2017 by Lbond94 4100
Look up the Brighton score and also talk to your Dr about your symptoms
Posted Oct 6, 2017 by Sasha 2050
You have aches, pains, bruise easily, bowel issues and hypermobily joints and stretchy velvet skin
Posted Oct 7, 2017 by Sharon 7050
Signs and symptoms of EDS vary from person to person. Things like skin fragility, transparency, easy bruising/bleeding, hyper mobility, dental/vision problems, physical deformities, unexplainable physical and psychological issues can all be signs. First talk with your' Primary Care Physician, if that gets nowhere, write down all concerning matters, do research, try to locate a knowledgable Doctor that specializes is connective tissue disorders(hardest part) or take matters into your' own hands and have your' DNA tested.
Posted Oct 25, 2017 by Dolores 3050
If you have generalized joint instability, joint pain, and joint instability, and you have a family history of those kinds of symptoms, you could have EDS. People with EDS also tend to have abnormal scarring, dysautonomia, frequent "weird" injuries, and are often very clumsy.
Posted Jan 14, 2018 by stairphobe 3070
1) google the symptoms and criteria - do you meet all of them in one of the subtypes? Might be worth asking your doctor then
2) a rheumatologist will ask about symptoms and evaluate you on the beighton and brighton criteria. If you seem to just have hEDS or JHS you'll stick with a a rheumatologist, you don't move on to step 3 (and all the people who needlessly move to step 3 and don't have any real reason to make survival much harder for those of us who really did/do need to move to step 3 but then die on waitlists
3) if you fit a subtype that has a gene associated with it and is more serious you'll be referred to a geneticist with knowledge in connective tissue diseases primarily
4) you get an exome done or just that one gene is tested, usually an exome and you find out if you have any associated genes or not.
2) a rheumatologist will ask about symptoms and evaluate you on the beighton and brighton criteria. If you seem to just have hEDS or JHS you'll stick with a a rheumatologist, you don't move on to step 3 (and all the people who needlessly move to step 3 and don't have any real reason to make survival much harder for those of us who really did/do need to move to step 3 but then die on waitlists
3) if you fit a subtype that has a gene associated with it and is more serious you'll be referred to a geneticist with knowledge in connective tissue diseases primarily
4) you get an exome done or just that one gene is tested, usually an exome and you find out if you have any associated genes or not.
Posted May 26, 2018 by Danielle 1500
Look up how to test your beighton score at home if it is 5 or more talk to your doctor
Posted Sep 29, 2019 by Amy 13500
Genetic and clinical testing
Posted Mar 11, 2020 by MegTheMariner 1870
Measure yourself using the Beighton Scale. Read about symptoms, and ask family members if they have them to. Talk to your primary doctor with all the information you've gathered, or an EDS specialist if you can find one.
Posted May 12, 2020 by Alex 3551
Joint sublaxation loose skin and thinning skin, dry hair/ skin, Genetic factors
Posted Nov 19, 2021 by NuNu 2550
