The Facebook group is currently up to 173 members - wow!
If you have not joined already, please consider it. You will find people all around the world in the same or similar situation as yourself. There is a bunch content - personal stories, pictures, videos, questions, answers, cheering, caring and a whole lot of emotions. All the activity on the group wall is a bit overwhelming but check it out and see if it's for you.
You will find information on how to join here.
Facebook PollA while ago I created a poll where I asked the members how old they were when their exfoliative cheilitis first appeared. 36 members participated and the result was age span 16-18.
This is a screen capture of the poll.
Browsing through the group wall history I found that a similar poll had actually been created a couple of months earlier by by the member Aksh. This is one of the drawbacks with a Facebook group: information - good or bad - is eventually lost or pushed out of sight, until it gets repeated a couple of day/months later.
The Exfoliative Cheilitis DatabaseHowever, Aksh have now created an online questionnaire with a google spreadsheet, which means it will not be lost on the Facebook wall. We need all the data we can get on our condition, and it seems like it's up to us to create it. So please take a couple of minutes to fill in your answers. We can do this people!
You will find the questionnarie here.
A big thank you to Aksh for creating this, and a big hug to all of you - hang in there!