#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 ~ Monday
8pm GMT (3pm EST 12pm PST 2pm CST)
US, Canada and night owls chat ~ Monday
8pm EST (5pm PST 7pm CST 1am GMT [Tues])
*NEW* Tuesday daytime chat
2pm GMT (6am PST 8am CST 9am EST)
This chat has been introduced for those in other time zones who have expressed excitement at joining in. The questions will be the same as the other two chats each week. If you are around, please do come along and support our zebras around the world. If you would like me to post any more time conversions on a permanent basis please shout, or check out my favourite website for converting times.
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 week we’ll be talking about getting out and about
Whether that means work, school or accessing the community
Q1. What does getting out and about mean to you? For example, work, school or socialising with friends.
Q2. What problems do you face when going out? For example, having to find wheelchair accessible transportation.
Q3. How do you minimise the impact of these problems? For example, planning ahead or making sure someone is with you.
Q4. Do you have problems getting out that are especially difficult to work around? For example, sudden onset of fatigue
Q5. What are the positives of going out? For example, being able to socialise with friends
Q6. Would you be able to get out of the house more if you had more support from a PA, family or friends?
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.