"Suffering the Slings and Arrows of Outrageous Fortune"

 

interview-notesWhile I was ‘away’, I have been up to mostly the same-old-same-old (polishing the manuscript, tweaking the book proposal, gathering info on literary agents, recovering from our ice skating birthday adventure and playing Angry Birds) but recently something new and pretty darn exciting came up and I would like to share it with you.

I was contacted by a web site called Kinsights – it is a parenting site where you can ask (and answer) questions on any number of topics related to child rearing – and they asked to do an interview with me. There is a new group for Ehlers-Danlos that has been started and this is a nice resource for parents who want to share information with others who are going through the same struggles.  You can also share notes, links, images and there is even a record keeping tool that they are hoping to customize so it is useful for the members of the EDS board. I will likely be reviewing some of the features of the site in the near future so I don’t want to go into too much detail now but I do hope you check it out. I will be ‘over there’, as much as I can, to answer questions. You just need to create an account and you can join in the conversations.

Interview-image

 

While you are there, please check out the interview they did with me:

Ehlers-Danlos Syndrome 101- An Interview with an EDS Mom

Are there alternative treatments or therapies for EDS?

What is important for parent to know who just received a diagnosis of EDS?

What advice do you have for parents trying to get a diagnosis for their child?

You won’t be surprised to see that it is in multiple posts, because my answers were, ahem, predictably ‘thorough’. (In my defense, there were quite a few questions and they all deserved a thoughtful answer.) I must say, the questions were very good and pertinent, I think, to parents who are managing a new or recent diagnosis for their child and I have been impressed with the willingness of the Kinsights’ staff to research and learn the basics in order to promote the EDS board so it can be as helpful as possible to EDS parents.

I was honored to be asked to contribute and I hope my answers, for those who can wade through them, are useful.

 

 

 

For anyone popping in from Kinsights:

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