Year: 2016

EDS Population Survey – Utah and Surrounding Areas

Published by HypermobileYogi

Ehlers-Danlos syndrome (EDS) is a common comorbid condition to Mast Cell Activation Disorders. For those who have been diagnosed with EDS and live in Utah or surrounding areas, please consider taking this survey. “Make your EDS voices heard! There is a medical institution in Utah that is considering opening an EDS devoted center or clinic. One of our main volunteers and personal close friend, has been asked to help collect data to convince the funding side of this potential project that there is need, that there are enough of us, and that we would show up for diagnosis and/or treatment, if a center exists. If you live in the Western US, or would be willing to travel to Utah for treatment, please take a moment to complete the following survey. Our friend collaborated in designing the survey, and has been assured that the data will be seen by those in a position of influence and decision. This information will be used to help inform what kinds of services are needed. Please feel free to share …

#Just5Minutes of Barre – The realization that I’ve seriously deconditioned

Published by HypermobileYogi

#Just5Minutes of barre thanks to Tracey Mallett Fitness’ Booty Barre workout video. BootyBarre plus arms and abs kicked my butt today. Could also be from the lovely #POTS flare I’ve been dealing with lately, but I still got through it. Lots of stops and restarts. Lots of trying to breathe deeply despite feeling seriously out of breath and my heart racing even higher after I stop moving. Barre is also low-impact which makes it more frustrating when I have a hard time keeping up. I move my leg and my heart rate skyrockets. As much as I don’t want to admit it, I’m pretty sure this flare is exacerbated by overall deconditioning that’s progressed over the last year because of working on my computer more, and moving around a lot less during the day, despite still working out and staying active. My strength sessions have also struggled, as have my consistency with going to cycling – both are two things that make a huge difference in how my body reacts to exercise and fights against “The …

Wellapalooza 2016 3-Day Integrative Wellness Retreat

Published by HypermobileYogi

Wellapalooza 2016 is 3-day integrative wellness retreat in the MD/DC/VA area – we are a different type of medical or wellness conference! We’ve added a few updates to our event schedule and bios on Team Wella 2016. Additional details and answers to questions that we’ve received are explained below. If you do not find the answers you are looking for, please send us an email to info@wellapalooza.com. Whatever is not included here, will be either posted tomorrow on the Wellapalooza website and Facebook page or sent in an email. Still, if you have additional questions or if I do not include an answer to your question, please send an email. Wellapalooza 2016 Information Wellapalooza 2016 is thrilled to host incredible speakers such as Dr. Clair Francomano — Geneticist & Ehlers-Danlos syndrome specialist, Dr. Larry Afrin – Oncologist/Hematologist — Mast Cell Activation Disorder specialist, Dr. Christine Mohrhaus Hale — Tenet Healthcare, Dr. Deborah Norris, Ph.D. — The Mindfulness Center, and Rebecca Snow – Nutritionist/Herbalist. Additionally, we are holding a Physicians Learning Lunch in conjunction with Wellapalooza …

Fight Song Video Project – Send In Your Video Clip!

Published by HypermobileYogi

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

Published by HypermobileYogi

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!

Published by HypermobileYogi

 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)

Published by HypermobileYogi

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?

Published by HypermobileYogi

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.