14

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

Do I have Ehlers Danlos?

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.


Diseasemaps
16 answers
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"

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

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.

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

Do I have Ehlers Danlos?

Ehlers Danlos life expectancy

What is the life expectancy of someone with Ehlers Danlos?

23 answers
Celebrities with Ehlers Danlos

Celebrities with Ehlers Danlos

6 answers
Is Ehlers Danlos hereditary?

Is Ehlers Danlos hereditary?

20 answers
Is Ehlers Danlos contagious?

Is Ehlers Danlos contagious?

21 answers
Natural treatment of Ehlers Danlos

Is there any natural treatment for Ehlers Danlos?

15 answers
ICD9 and ICD10 codes of Ehlers Danlos

ICD10 code of Ehlers Danlos and ICD9 code

15 answers
Living with Ehlers Danlos

Living with Ehlers Danlos. How to live with Ehlers Danlos?

21 answers
Ehlers Danlos diet

Ehlers Danlos diet. Is there a diet which improves the quality of life of p...

26 answers

World map of Ehlers Danlos

Find people with Ehlers Danlos through the map. Connect with them and share experiences. Join the Ehlers Danlos community.

Stories of Ehlers Danlos

EHLERS DANLOS STORIES
Ehlers Danlos stories
Eu nasci com Síndrome de Ehlers-Danlos, afinal a Síndrome de Ehlers-Danlos é uma doença genética. Eu descobri que tinha Síndrome de Ehlers-Danlos aos 45 anos, por acaso. Vendo uma apresentação sobre Score de Beighton (método de avaliaçã...
Ehlers Danlos stories
I suffered my entire life with issues and signs of Hypermobile type Ehlers-Danlos Syndrome, including extreme flexbility as a child that I "grew out of" in my young adulthood, slowlyl stiffening with age and early onset arthritis. Like too many, doct...
Ehlers Danlos stories
Lost all my friends all I know is chronic pain, 29 years has passed in a blink of an eye. I am lonely depressed and given up on by doctors who just label me and close the door. Stick me on meds and shut me up. I have degeneration in my spine 3 hernia...
Ehlers Danlos stories
I have always been sick all my life, not knowing why. When I started taking my BP more frequently, I realized alot of my symptoms were BP related, thus since been dx with dysautonomia, due to EDS. Before this time, I had pursued answers, with many cl...
Ehlers Danlos stories
I'm 54 years old and have had to learn to "just live with it". Stretchy skin and bendy joints have the pain in my life. My skin has been so thin that what would be a bruse for a normal person was a laceration for me. My knees are a wreck. My body hur...

Tell your story and help others

Tell my story

Ehlers Danlos forum

EHLERS DANLOS FORUM
Ehlers Danlos forum
We were in a car accident several months ago. Before that, I was hypermobile, but not as badly as I am now. Could the trauma of the accident trigger more issues with my connective tissue overall? For example, even though my feet/legs were uninjured, ...
Ehlers Danlos forum
So in the past 2-3 months i have been doing acupunture but after wards im in so much pain to wear my doctor puts the needles, does this happen to you?
Ehlers Danlos forum
The doctor has recommended exercise and physiotherapy to strengthen the muscles of my son and, then, protect his joints... anybody can advise in what kind of exercises or sport? I thin swimming may be the best option… Many thanks!
Ehlers Danlos forum
Looking for other diagnosed VEDS.

Ask a question and get answers from other users.

Ask a question

Find your symptoms soulmates

From now on you can add your symptoms in diseasemaps and find your symptoms soulmates. Symptoms soulmates are people with similar symptoms to you.

Symptoms soulmates

Add your symptoms and discover your soulmates map

Soulmates map