#EDSchat twitter chat ~ Monday 3rd October


#EDSchat is a new chat to twitter and has been created for people with EDS (Ehlers-Danlos syndrome) and other connective tissue disorders. Whether you have had a formal diagnosis, are self diagnosed or believe that you may have symptoms of EDS, you are very welcome to come along and share ideas with others like you. Similarly, if you have any conditions that greatly overlap with the symptoms of EDS we would love to have you. Even if you have a friend or family member who has EDS, and you would like to learn more, please feel free to join us. We are very friendly group of people, and would love to have you in the herd.

When is it?

We are having two rounds of #EDSchat each Monday, one ostensibly for those on GMT, and another for those over the pond. The times will be as follows:

UK and daytime chat

8pm GMT (12pm EST 2pm PST 3pm CST)

US, Canada and night owls chat

8pm EST (11pm PST 5pm CST 1am GMT)


What is EDS?

EDS is a connective tissue disorder that comes in seven sub types:

For more information please visit EDS UK

In our third week, we’re going to be talking about things that help us.  Exercise, medication, alternative treatments, good old fashioned pacing and knowing your body and its limits.  If it helps you, we want to hear about it!

Q1.  How do you exercise safely in a way that promotes mobility and eases (or does not exacerbate) pain?

Q2.  Have you been offered any treatment through your doctor, such as physio or hydrotherapy? Did you find them helpful?

Q3.  Have you tried any alternative treatments such as acupuncture or herbal supplements? Did you find them helpful?

Q4.  Have you tried any thing else to alleviate symptoms of EDS, excluding prescribed medication?

Q5.  Do you have any lifestyle advice that helps your EDS, such as pacing and diet?

If you have any suggestions for future chats, questions or comments, please do feel free to comment below.

We look forward to seeing you there, at @EDSchat. Remember to use the hashtag #EDSchat before, during and after the scheduled sessions when talking about EDSchat, so we can all find each other and see your comments.


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