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


Ehlers-Danlos syndrome (EDS) is a group of genetic disorders that affect the connective tissues in the body. These tissues provide support and structure to various organs, joints, and blood vessels. EDS can manifest in different ways and can vary in severity from person to person.



Recognizing the signs and symptoms:



If you suspect you may have EDS, it is important to consult with a healthcare professional for a proper diagnosis. However, there are certain signs and symptoms that may indicate the presence of EDS:




  • Joint hypermobility: Individuals with EDS often have joints that can move beyond the normal range of motion. This can result in frequent joint dislocations or subluxations.

  • Stretchy or fragile skin: EDS can cause the skin to be unusually elastic, fragile, or prone to bruising.

  • Chronic joint or muscle pain: Many people with EDS experience chronic pain in their joints or muscles.

  • Easy scarring: Wounds may heal slowly and leave noticeable scars.

  • Frequent sprains or strains: EDS can make individuals more susceptible to sprains and strains due to weak connective tissues.

  • Cardiovascular issues: Some forms of EDS can affect the blood vessels, leading to problems such as aneurysms or mitral valve prolapse.

  • Gastrointestinal problems: EDS can cause digestive issues like gastroesophageal reflux disease (GERD) or irritable bowel syndrome (IBS).



Getting a diagnosis:



If you identify with several of these symptoms, it is crucial to consult with a healthcare professional who specializes in connective tissue disorders. They will conduct a thorough evaluation, which may include:




  • Medical history: Your doctor will ask about your personal and family medical history, paying close attention to any symptoms related to EDS.

  • Physical examination: The doctor will assess your joint flexibility, skin elasticity, and look for any other physical signs associated with EDS.

  • Genetic testing: In some cases, genetic testing may be recommended to identify specific gene mutations associated with EDS.

  • Specialized tests: Additional tests such as imaging studies or cardiac evaluations may be ordered to assess the extent of any related complications.



Living with EDS:



If diagnosed with EDS, it is important to work closely with your healthcare team to manage the condition effectively. Treatment options may include:




  • Pain management: Developing a personalized plan to address chronic pain through medication, physical therapy, or other interventions.

  • Joint support: Using braces, splints, or other assistive devices to stabilize joints and prevent dislocations.

  • Physical therapy: Engaging in exercises and stretches to strengthen muscles and improve joint stability.

  • Monitoring and managing complications: Regular check-ups and screenings to detect and address any potential cardiovascular or gastrointestinal issues.

  • Supportive care: Seeking emotional support through counseling or joining support groups to connect with others facing similar challenges.



Remember, only a healthcare professional can provide an accurate diagnosis of Ehlers-Danlos syndrome. If you suspect you may have EDS, it is essential to seek medical advice to receive appropriate care and support.


by Diseasemaps

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"

5/25/17 by Maria 2051

By seeing a rheumatologist and a geneticist they will check you for eds with a series of tests

5/27/17 by Jude 2050

Research symptoms and diagnosis criteria. If you suspect that you have it, go see a geneticist

5/28/17 by Celi 2000

You have to be diagnosed, preferably by a geneticist, in a clinical setting.

5/31/17 by KathrynOConnor 2200

If you suspect you have Ehlers Danlos talk to your doctor about it,

6/4/17 by Richelle 1750

Some of the signs I experienced are; Dislocations velvety skin Flexible joints

9/27/17 by Lbond94 4100

Look up the Brighton score and also talk to your Dr about your symptoms

10/6/17 by Sasha 2050

You have aches, pains, bruise easily, bowel issues and hypermobily joints and stretchy velvet skin

10/7/17 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.

10/25/17 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.

1/14/18 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.

5/26/18 by Danielle 1500

Look up how to test your beighton score at home if it is 5 or more talk to your doctor

9/29/19 by Amy 13500

Genetic and clinical testing

3/11/20 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.

5/12/20 by Alex 3551

Joint sublaxation loose skin and thinning skin, dry hair/ skin, Genetic factors

11/19/21 by NuNu 2550

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