All posts tagged: Ehlers-Danlos syndrome


We had fantastic 1st & 2nd MIND-BODY STRATEGIES FOR HYPERMOBILITY AND CHRONIC PAIN classes!  Thank you to everyone who came out! A follow-up email including information shared in the both classes will be sent soon. Promise.  Our 3rd class will focus on the mindfulness for hypermobility study that was conducted at NIH a few years ago, John Kabat-Zinn’s Mindfulness program, and will include a 30 mins restorative yoga practice.  All levels welcome! This series of 4 classes are being held at The Mindfulness Center in Bethesda, MD.  Classes begin at 1:30pm.  Address for The Mindfulness Center: 4963 Elm St., Suite 100. Bethesda, MD 20814 (Above the Wells Fargo Bank) We have several people registered, which is great! If you are already registered or are interested in joining us tomorrow or for our final class in this series on December 2nd, here are a few suggestions to help ensure your safety and comfort: – If you have a yoga mat, you are welcome to bring it. However, The Mindfulness Center has plenty. I often recommend using …

Pictures from EDS Wellness’ 2nd Mind-Body Class for Hypermobility and Chronic Pain

A few pictures from our 2nd Mind-Body class for Hypermobility today. We discussed wrist, neck and ankle issues, how to practice yoga safely with Hypermobility, proper form in specific poses, things to look for when practicing yoga, the use of props, and finished with a gentle flow yoga practice. Professional pictures by Christina Maldonado Photography    

#Just5Minutes – 20 mins cycling at home and the other side of needing meds to help you focus 

Sometimes you just aren’t feeling like it. Other times there’s so much going on that you have to choose sleep or to exercise. Most of this week, I opted to get sleep because how much it affects my brain cognition, my ability to drive and to get through a day of non-stop appointments, meetings, conference calls, and life. It was also my birthday this week, and I usually love to book my favorite classes back to back, just because I can, but that didn’t happen this week. It didn’t happen on my birthday either. I have been feeling very run down this week, and more than frustrated because of how I felt. I didn’t understand it. It didn’t make sense to me. I was getting sleep but felt like a train wreck when I woke up. Part of me couldn’t believe or accept that the way I was feeling was because I crammed hard for the C.H.E.S. exam last Saturday. It had been several days since I sat for the exam and it didn’t make …

Upcoming Events and Conferences! 

A few exciting updates:  1. The EDS Wellness HelpLine is live! You can schedule 15min phone appointments and also send emails to Direct link to HelpLine appointment scheduling –  Link to post shared on EDS Wellness – 2. EDS Wellness has an App! Link to download the EDS Wellness App by Healcode LLC on iTunes – Also available on Google Play! 3. I’ve announced several events coming up, including yoga and mindfulness for hypermobility and chronic pain. Save the date if interested! See flyers below! Registration will be live soon!

Autonomic testing before my business meeting at 3pm

Days like today are why I’m grateful that the life I live and the work I do overlap. Gratitude.  Link to the autonaumic nervous system test (Ansar Testing) that I had done – What is autonomic dysregulation? You can also visit to learn more. 

The Constant Whooshing in My Head …..

When you have constant, non-stop whooshing in your head (no, not just tinnitus), you’ve been diagnosed with Classical Ehlers-Danlos syndrome (CEDS) 3x, but genetic testing came back negative, and the EDS world really doesn’t know what you have – other than you have some kind of connective tissue disorder that’s not Marfan Syndrome, VEDS, or other more common mutations …… They do know that you have 2 CBS Gene mutations and a few other genetic mutations, but they haven’t determined how any, if at all, play a role in a type of EDS, or a connective tissue disorder that “looks like” Classical/Vascular/Hypermobility-types of EDS. And there’s no identified genetic marker(s) for Hypermobility type Doctors and genetic testing has also determined that you have 2 CBS Gene mutations and a few other genetic mutations, but they haven’t determined how any, if at all, play a role in a type of EDS, or a connective tissue disorder that “looks like” Classical/Vascular/Hypermobility-types of EDS. And there’s no identified genetic marker(s) for Hypermobility type EDS, unless you count TenX. …

Adaptive Yoga – Yoga for All!

Most know how much I love yoga, and how strongly I feel about it being perfectly safe when done right for those with Hypermobility. There are also countless types of yoga, including Restorative Yoga, where you do more laying down, relaxing, and meditating than moving. There’s also Chair Yoga, Yoga Nidra, and much more! Yoga Nidra, a type of meditative yoga practice, is one of my favorite types of yoga by far! The Restorative Yoga class at The Mindfulness Center during Wellapalooza 2016, which was led by Dr. Norris, had many of us in tears. Restorative Yoga, and yoga, in general, can be incredibly powerful and healing — and it certainly was that day. In addition to my yoga for hypermobility/Ehlers-Danlos syndrome/Mindfulness for Ehlers-Danlos syndrome program that will be offered in November (series of 4 classes as part of my Seva requirement for Yoga Teacher Certification), below is information on both an adaptive/all-accessible yoga conference by Accessible Yoga, and another endeavor started by Body Positive Yoga & her best friend. Read below — and make …

Online Yoga Support Group for those with Hypermobility Syndrome/EDS

An online group for those who are interested in learning ways to practice yoga safely with joint hypermobility/hypermobility syndrome (HMS)/Ehlers-Danlos syndrome (EDS). All levels are welcome – new and experienced. Click on the link below. You can also follow the Hypermobile Yogi Facebook Page

Wellapalooza 2016 3-Day Integrative Wellness Retreat

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 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 …