’51 Tips for Parents of Children Newly Diagnosed with Ehlers-Danlos syndrome (EDS)’ publishing release update – please read! 

Well, here we are …. about to finish the 2nd full week in June, and we are even farther away from the May 31st publishing release date of ’51 Tips for Parents of Children Newly Diagnosed with Ehlers-Danlos syndrome (EDS)‘ – the anticipated e-book that Sarah Wells and I put together as parents with three kids with EDS each, for parents of children newly diagnosed with or suspected to have Ehlers-Danlos syndrome. The 31st of May came and went, as did EDS Awareness Month and then June 1st, June 2nd, the first full week in June, and then the second week, yet the EDS kids e-book still hasn’t been released.

You are probably wondering, “What’s going on?”

Or, “Did they actually put a book together? Do they even have one to release?”

The answer is yes, but we don’t blame you for feeling a bit confused, if not skeptical. So, below we’ve provided our short answer explaining the cause of our delay. Most importantly, we are releasing our e-book cover, and an updated digital publishing release date.

While both Sarah and I posted updates at the very end of May stating that we had our own EDS kids that we had to take care of, unfortunately a delay of a day or two turned into a few weeks. Sarah and I found ourselves smack in the middle of a bunch of our own “living with EDS” life issues that had to take priority over everything else. Additionally, I was also the final hours of planning and coordinating Wellapalooza — a 3-day wellness retreat, which included bringing in Dr. Larry Afrin to speak on Mast Cell Activation Disease and how it relates to other chronic illnesses.

As if a 3-day retreat isn’t a big enough undertaking in itself, I decided to utilize the fact that Dr. Afrin was in town and put together a Physicians Learning Lunch for healthcare providers only on Sunday, June 12th — Wellapalooza Day 3. On the morning of June 12th, Wellapalooza retreat attendees had the option of time to themselves, or to attend a second Q & A session with Afrin. We also opened up the second Q & A with Dr. Afrin to the members of the MD/DC/VA Mast Cell Disorders support group — who were all more than appreciative for the opportunity to see and talk to Dr. Afrin.

Both Sarah and I had previously scheduled appointments and activities, on top of releasing the e-book, but unfortunately, emergencies took precedence over all else; hence, the main reason for the delay in releasing our e-book. With that being said, personal delays have allowed for additional time to discuss additional information and resources to include in ’51 Tips for Parents of Children Newly Diagnosed with Ehlers-Danlos syndrome (EDS)’  — making it as complete of a resource as possible. We also included a special chapter to our e-book written by a well-known author, specifically for the parents of kids with Vascular Ehlers-Danlos syndrome (VEDS), based on her experiences as a mom raising a child with VEDS.

A few other hiccups had to do with formatting, which our editor helped us correct. We also decided to send our e-book to the Hypermobility Syndromes Association (HMSA) in the UK for them to take a look at it prior to its release.

So what’s the updated release date?  

Soon. We are dotting all our I’s and crossing all T’s. It’s hard to give an exact date, because as soon as we finalize all last-minute additions and corrections, and then add in images and graphics, we will post an update and send the e-book to everyone who participated in our EDS Awareness campaign. The release of our e-book could be this weekend, or it could be later next week. Even though it’s nearly complete, there’s a lot of coordination between various parties to ensure that all parts of the e-book are as we expect them to be.

Thank you for your patience and understanding. And we hope you like the cover – we sure do!

– Kendra & Sarah

Slide1 copy

Previous post: 

“EDS Awareness month we will be giving you a sneak peek each day from our upcoming e-book ’51 Tips for Parents of Children Newly Diagnosed with Ehlers-Danlos syndrome (EDS)‘ – coming soon!

What first started out as a joint blog post about parenting and having kids with EDS, turned into a six-month-long project that Sarah Wells (from My Stripy Life) and I have been working on off and on, waiting for the right time to finish and release it. As we continued to work on it, we kept finding more and more to add, and even more information and resources that we wanted to make sure were included in our post – which then turned our joint blog post into a full resource e-book.

This e-book is the real; no holds barred advice that we wish we knew, and we hadn’t had to figure out for ourselves, the stuff that the medical books don’t always tell you!

Our parenting kids with EDS handbook/e-book is an excellent resource for parents with newly diagnosed EDS Kids, in fact, all EDS parents! It includes all of the tips and advice it has taken us years to figure out on our own – both moms of three kids with various degrees of Ehlers-Danlos syndrome and its related conditions. This e-book is the honest and practical advice that best friend would give you.

We’ve included details on what you need to do to register for your FREE copy our parenting EDS Kids e-book ‘51 Tips for Parents of Children Newly Diagnosed with Ehlers-Danlos syndrome (EDS)’ once it’s released!

You can register for your free copy in three easy steps – here’s what you need to do:

Like both the EDS Wellness & My Stripy Life Facebook Pages (if you haven’t already done so)
Sign-up to receive email updates from both of us, including new blog posts, our newsletters, and pertinent information. No, we will not spam you and probably will not get around to emailing that frequently – promise. (links are below)

Share one of our 31 Tips posts from each of us during the month of May on Facebook or Twitter. Meaning – share a total of 2 posts all posts – 1 post from Sarah and one post from EDS Wellness (or share a 31 Tips post from any of my pages)

Subscription links are below:

  • EDS Wellness’ Newsletter & Email List – Subscribe!
  • My Stripy Life’s Newsletter & Email List – Subscribe!

Stay tuned for more top tips each day and information about how to get a copy of ‘51 Tips for Parents of Children Newly Diagnosed with Ehlers-Danlos syndrome (EDS)’ delivered straight to your inbox!


– Sarah & Kendra”

To view our original link where we shared the gallery of memes about raising kids with EDS based on our e-book for EDS Awareness Month, go to ‘51 Tips for Parents of Children Newly Diagnosed with Ehlers-Danlos syndrome (EDS)