Ehlers-Danlos Syndrome - Experience

Not ready to share? Read other Patient Comments

What lifestyle changes have you experienced that has helped symptoms of Ehlers-Danlos syndrome?

Share your story with others:

MedicineNet appreciates your comment. Your comment may be displayed on the site and will always be published anonymously.Patient Comments FAQs

Enter your Comment

Tell us a bit about your background to make your comments more useful to other MedicineNet users. (Optional)

Screen Name: *

Gender of Patient: Male Female

Age Range of Patient:

I am a: Patient Caregiver

* Screen Name will appear next to the published comment. Please do not include your full name or email address.

By submitting your comment, and other materials (collectively referred to as a "Submission") to MedicineNet, you grant MedicineNet permission to use, copy, transmit, publish, display, edit and modify your Submission in connection with its Web site. MedicineNet will not pay you for your Submission. You represent that you have all rights necessary for MedicineNet to use your Submission as set forth above.

Please keep these guidelines in mind when writing your comment:

  • Please make sure you address the question asked.
  • Due to the overwhelming number of comments received, not all comments will be published.
  • When selecting comments to publish, our staff will choose those that are educational and complement the topic. Please try to stay on topic.
  • Your comment may be edited. We would typically edit comments to make them clearer and more readable. We will remove personal information such as last names, email and web addresses, and other potentially harmful information.
  • We will not notify you if your comment has been published. We suggest that you check back on the topic article regularly.
  • We do not provide medical or healthcare advice, treatment, or diagnosis.

Thank you for participating!

I have read and agree to abide by the MedicineNet Terms and Conditions and the MedicineNet Privacy Policy (required).

To prevent our systems from spam, please complete the following prior to submitting your comment.

Please select the black square:

What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndromes are a group of disorders which share common features including easy bruising, joint hypermobility (loose joints), skin that stretches easily (skin hyperelasticity or laxity), and weakness of tissues.

The Ehlers-Danlos syndromes are inherited in the genes that are passed from parents to offspring. They are categorized according to the form of genetic transmission into different types with many features differing between patients in any given type. The fragile skin and loose joints is often a result of abnormal genes that produce abnormal proteins that confer an inherited frailty of collagen (the normal protein "glue" of our tissues).

In 2001, researchers discovered a new form of Ehlers-Danlos syndrome that is caused by an inherited abnormality in a protein other than collagen that also normally plays a role in binding together the cells of our tissues (including the skin, tendons, muscle, and blood vessels). Abnormalities in this protein, called tenascin, also lead to a form of Ehlers-Danlos syndrome. Researchers suspect that tenascin could play a role in regulating the normal distribution of collagen in the connective tissues of the body.

Return to Ehlers-Danlos Syndrome

See what others are saying

Comment from: Mommaofmany, 35-44 Female (Patient) Published: October 16

I only discovered the name Ehlers-Danlos syndrome a couple of years ago. I have always subluxated and dislocated easily, especially my right knee and hip. Bruising easily, bad teeth, very fast births, joint pain, all add up to EDS Type 3. Nearly ten years ago, I had such pain in my joints that I couldn't stand to be touched, even by my children! Everything hurt. I read about kombucha, a cultured tea that helped joint pain, so I tried it. It took about 3 weeks, but I noticed that my pain was gone! Later, I thought it was a fluke, and I got lazy and stopped drinking it. The pain came back. Now, ten years later, I am a faithful kombucha drinker. The subluxations and the dislocations continue, I still bruise easily and all the rest, but I am joint pain free, with no medication. I have changed my diet some, too, to reduce inflammation, but the pain was gone once I used kombucha, even when my diet was full of processed foods.

Was this comment helpful?Yes
Comment from: crazy dave, 55-64 Male (Patient) Published: October 29

I was diagnosed with Ehlers-Danlos syndrome (EDS) at 11 years of age. Hypermobility of joints has caused many dislocations of shoulders, knees, and fingers. I am now 62, and I can tell you that the best remedy is low impact exercise and a lot of it. The stronger the muscles are, the more support the joints have. Please try to back off the narcotics, if humanly possible and get plenty of vitamin D and protein in your diet. Good luck!

Was this comment helpful?Yes


Get the latest health and medical information delivered direct to your inbox!