#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 (4pm EST 1pm PST 3pm CST)
US, Canada and night owls chat
8pm EST (5pm PST 7pm CST 12am GMT [Tues])
How does it work?
If you’ve not participated in a twitter chat before and are not quite sure how to follow it with the hashtag, check out this thread here, it is a great guide. I personally am using the twitter platform Plume to participate in twitter chats and finding it really easy to use. If you have any other questions please comment on this post or tweet @edschat
What is EDS?
EDS is a connective tissue disorder that comes in seven sub types:
For more information please visit EDS UK
In our forth week, we will be taking it an little easy and will leave plenty of time for people to introduce themselves and start getting to know each other, but we will have some prompting questions (following the usual structure of a twitter chat) to keep things flowing.
This weekwe’ll be speaking about physical therapy (PT). It’s benefits, accessibility and practicalities.
If you haven’t had formal physical therapy, perhaps you could answer the questions focusing on more informal exercises and self help techniques you find helpful for mobility and pain levels.
Q1. Are you currently having physical therapy or have you had PT in the past?
Q2. If you are having or have had physical therapy, do/did you find it helpful?
Q3. What physical therapies have you found worked best for you?
Q4. Have you found your physical therapist to be mindful of and/or knowledgeable about EDS?
Q5. Have there been physical therapies that you’ve been unable to access now or in the past?
Q6. If you have been unable to access physical therapies now or in the past, what were the reasons?
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.