Month: May 2016

Fight Song Video Project – Send In Your Video Clip!

Fight Song Video Project – Send In Your Video Clip! Max 1 min video clip of you singing, dancing, or both to “Fight Song” by Rachel Patton For anyone suffering from a chronic illness, including those who love and care for someone with a chronic illness, especially those with Ehlers-Danlos syndrome (EDS), Mastocytosis, Mast Cell Activation Syndrome (MCAS), and Dysautonomia/POTS Email to Kendra@wellapalooza.com Your submission means that you are giving us permission to use your video for a compilation video project that will be shared publically. 

Wellapalooza 2016 Retreat Registration Information

Wellapalooza 2016 Retreat Registration Information Our 2016 Wellapalooza conference is a destination 3-day integrative health and wellness retreat. Think vacation, calm, fun, and informative – the perfect way to recharge your mind, body, and soul! Dates: June 10th – 12th, 2016 Where: Maryland – split between Bethesda and Columbia Venues: The Mindfulness Center (Bethesda, MD), Haven on the Lake (Columbia, MD), and Turf Valley Resort (Ellicott City, MD) Confirmed speakers: – Dr. Clair Francomano (EDS/Genetics) – Dr. Larry Afrin (MCAS & Author of Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness & Medical Complexity) – Dr. Christine Mohrhaus Hale (Tenet Healthcare) – Deborah Norris, Ph.D. (The Mindfulness Center) – Rebecca Snow (Nutritionist/Herbalist/Chef) – & more! Registration for Wellapalooza 2016 is now live! We will be posting additional event details as we have them, but please feel free to email info@wellapalooza.com with any questions. Conditions of focus: Mast Cell Activation Disorders (MCAD), Ehlers-Danlos Syndromes (EDS), how these conditions relate to each other, and to other common chronic medical conditions. …

May is EDS Awareness Month!

 May is EDS Awareness Month! 


In honor of EDS Awareness Month (May), Sarah Wells from My Stripy Life and I are sharing 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! 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 and I have been working on off and on, waiting for the right time to finish and release it. As we continued to collaborate 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 …

51 Tips for Parents of Children Newly Diagnosed with Ehlers-Danlos syndrome (EDS)

Horraay! I cannot explain how excited I am to finally be able to share this awesome project with everyone! For 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 for EDS Awareness Month!

What first started out as a joint blog post about parenting and having kids with EDS, turned into a 6 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.

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!

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!

Cheers!

– Sarah & Kendra

What is EDS?

Ehlers-Danlos syndrome (EDS) is a group of heritable connective tissue disorders that are caused by various genetic defects in the collagen protein used to make our connective tissues. These disorders can cause a wide variety of complications throughout all body systems – Ehlers-Danlos syndrome is very much a multi-systemic disease.