Back again to share…

It has been way too long since I posted: all is well, just busy and the usual stuff gets in the way. I would apologize but you have heard it before… ok, I can’t not say it: I am sorry! 😦

It is May, of course – and that means Ehlers Danlos Awareness Month. I hope you are doing something, however small an action it may be, to promote awareness in your little corner of the world. Posting on social media is always a winner but there are all kinds of things that can be done.  Awareness is so important, as you all know, in making living with EDS a little easier. More awareness means more people knowing they have it,better treatment,more research being done and more understanding. I am going to be posting more frequently here and on FB (cross my heart!) during May and hopefully thereafter!

In the meantime, I wanted to share this very exciting, important development with you:

An anthology of EDS stories, Our Stories of Strength: Living With Ehlers Danlos Syndrome will be available this month: the Kindle version is now available for pre-order and will be published on May 8th on the Amazon Kindle Store. A printed table-top version will be available as well. Our SOS Media, created by Misti Reutlinger and Kendra Neilson Myles, is debuting their first anthology, the first of many to come. They have worked long and hard to compile more than 50 stories from people living with EDS and one of them is mine.

My submission is “A Letter to Emily’s Mom”, addressed to myself at the beginning of this journey. I am very excited to read the other stories and for Emily to read them as well.

I think it is wonderful that the EDS community will have such a collection of stories to encourage, uplift and to share. This will be something you can read and share with others: this book will be a wonderful way to raise awareness outside the EDS community and help friends and family understand the journey, as well as aid you on your own journey. I firmly believe there is nothing quite like knowing you are not alone when you are facing something like EDS.

 

 

 

Here is their Facebook page Go look and like them!

Here they are on Twitter Follow them! #OurStoriesofStrength

Here is a link to their website They are calling for submissions for future books, so have a look and consider sharing your own story.

If you are thinking, ‘that is lovely, but I don’t have a Kindle so how can I read it?’ On the amazon page, there is a link (top of the page, right below the title of the book) to get the free Kindle app, so you can read Kindle books on your smart phone, tablet or computer – you don’t have to have a Kindle to read this book! (All you have to do is supply your email or phone number and Amazon will send you a link for the app. Easy Peasy. You still have to buy the book, of course, but the app is free.)

I will share further updates here and I hope you will support these two ladies, fellow EDSers, in this worthy endeavor!