tag:blogger.com,1999:blog-8913410527801032443.post7664592725772894994..comments2023-05-10T04:06:34.174-07:00Comments on Living Bendy: EDS Awareness video. Get involved!Carriehttp://www.blogger.com/profile/06496819852705481151noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-8913410527801032443.post-37810077134483440652011-05-01T19:10:35.484-07:002011-05-01T19:10:35.484-07:00Hi Barbara.
Im no longer working on this project a...Hi Barbara.<br />Im no longer working on this project as I am about to start studying again but thank you very much for wanting to get involved.<br />May is EDS awareness month so now is a great time to start writing that blog and help make more people understand what EDS is and what it is like to live with. There are quite a few people who blog about EDS, some write very professionally and about the medical side of things, some write very informally and just talk about their day to tday life with EDS. There is no set style and any talk on EDS is always great and helps us all.<br /><br />Its easy to start a blog. this site I use at the moment is good becuase it does all the hard work for you in designing it and everything, you just log in and type. So maybe start by creating an account with blogger (it uses your googlemail account details if you have a google email account).<br />I write my blog entry in a word program like microsfot office and spell check it before copy and pasting here.<br /><br />I found blogs really helpful when i was first learning about eds and also when i decided i wanted to do more to raise awareness. Its really helpful also to read other blogs when you are thinking of starting your own.<br /><br />if you do start blogging please let me know where I can read it.<br /><br />Also there are a few groups on facebook for people with EDS that are full of people from the USA (im in the uk). If you aren't already a member of them it might help you by giving you access to other people with eds living near you who can recommend drs. <br /><br />The 2 best groups on facebook I find are :<br /><br />Zebras for life : https://www.facebook.com/home.php?sk=group_165535233484183&ap=1<br /><br />and<br /><br />EDS Friends : https://www.facebook.com/home.php?sk=group_128832327171082&ap=1<br /><br />cxCarriehttps://www.blogger.com/profile/06496819852705481151noreply@blogger.comtag:blogger.com,1999:blog-8913410527801032443.post-10234165208821500722011-04-27T21:19:27.550-07:002011-04-27T21:19:27.550-07:00I would love to help and share also.
Not sure how ...I would love to help and share also.<br />Not sure how to contact you since I have not started blogging, but age 53 EDS hypermobility and lots of other related issues. Live in a very large city, NYC and no one knows what EDS is. I have to go to another state for a specialist! So yes, would love to educate the public, cause I certainly don't look sick on a good day! BarbaraAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8913410527801032443.post-71089406658624420592011-01-01T21:16:44.572-08:002011-01-01T21:16:44.572-08:00thanks emma your work sounds great.
Iv set up a g...thanks emma your work sounds great. <br />Iv set up a group on facebook called Zebra Awareness Media for artists, bloggers and others who use art and media to raise awareness of rare conditions including EDS.<br />The film I talk about in this blog is just one of the few im working on as part of Zebra Awareness Media.<br />If you go to the group you can add your photos there for the film or just join and comment in the fim discussion.<br />You can also share links to your website and blogs to spread awareness of EDS and your story.<br />http://www.facebook.com/#!/pages/Zebra-Awareness-Media/179023998784113 (or use the Badge link at the side of the blog)Carriehttps://www.blogger.com/profile/06496819852705481151noreply@blogger.comtag:blogger.com,1999:blog-8913410527801032443.post-87282986124290658652010-12-04T13:00:35.278-08:002010-12-04T13:00:35.278-08:00Hey
I'm Emma i have hypermobile type eds (the ...Hey<br />I'm Emma i have hypermobile type eds (the one with tons of symptoms to make life really haggard but nothing much that might kill me so i'll live and suffer a loooong time, I think its kind of taboo to admit in the eds community you kinda wish you had a type that means I'll die soon, but honestly every minute is a huge effort for me and I feel like I live for my family and friends not for myself... anyways I've gone off topic (brainfuzz from meds) just wanted to say I'm really kean to help out in eds support in any way I can so let me know if there is anything spacific you need that I may be able to provide, I have photos of swollen knees and strange skin reactions etc but currently my laptop holding all my files is in a haopefully-temporary coma :$<br /><br />I could also link you alot of different blogs I follow (or check my list on my blog) that are lots of eds-ers who I'm sure would be happy to contribute.. and also I do alot of artwork about eds and pain (more for myself than for arts sake) as well as my illustration work and I'd be more than happy for you to use my images, I could even be happy to provide them for promotional purposes for the project, if there is anything you want to use..<br /><br />please check out my blog at http://ursulaapplebaby.blogspot.com/<br /><br />and artwork at<br />http://ursulaapplebaby.deviantart.com/<br /><br />I really hope I can help, and thankyou for writing your blog it is fantastic. Emma xEmmahttps://www.blogger.com/profile/09741788737588200682noreply@blogger.com