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EHLERS DANLOS SYNDROME (EDS) AND HYPERMOBILITY (HSD)

This site is only for informational purposes. 

EDS/HSD FEELS LIKE...

‘.....’  Patient

WHAT IS EDS/HSD?

 

Dysautonomia International thoroughly describes POTS on their website.  click here for info

When looking for research articles, it can be helpful to search other conditions you have and EDS to see if they are related. If you are specifically concerned about the treatment, it can be helpful to search that specific treatment.  Check with your local library if the articles you need aren't free.  Google Scholar is helpful and has a lot of free resources.​

HELPFUL RESEARCH ARTICLES AND MEDICAL SITES

Research articles can be helpful and validating, but frequently there is a lack of research.

COPING WITH HYPERMOBILITY

Exercise is often recommended to treat EDS/HSD but it's easy to over do it.  Here are some tips!

Mother and Daughter Meditating

GETTING A DIAGNOSIS AND TREATMENT

If you think you have EDS, use this info to get to the right doctor or ask your primary care doctor to preform the tests.

  • Many struggle for years to get a EDS diagnosis and are instead told they have anxiety, even by cardiologists. 

  • Use the FB pages below to find a doctor in your area.  It's important you find a doctor familiar with EDS, if not, they may tell you it's anxiety.  

  • Multiple specialists treat EDS....

  • If you have EDS and left sided pain, epigastric pain, struggle to eat, or you feel like you have more than just EDS, check out our pages on dysautonomiaMALSNutcracker Syndrome, ME/CFSSMAS, MCAS, and POTS.  Sometimes EDS symptoms are alleviated by treating vascular compressions. 

Ehlers Danlos. Genetic disorder connective tissue..jpg

IN THE NEWS

Many people share their stories because it was so difficult to get a diagnosis, even after Long COVID.

FACEBOOK GROUPS FOR EDS

It can be helpful to connect with others about their experiences.  You can ask about doctors in your state, how their treatment went, compare symptoms, and get support from others who understand what it's like to have EDS.

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  • Try to join groups with the most members to give you a larger sample size and a higher probability of finding someone with symptoms like yours. 

  

  • Remember that Facebook is public and follow the group rules. 

  

  • Go to this page for more helpful hints on using Facebook as a resource.

  • We've listed a few groups, but there are others.  Pick your favorite and disregard the others.  

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COMING SOON

COMING SOON
 

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