How does it feel to be a second class person? Living in a civilized and developed country with supposedly one of the best health systems in the world and the world’s leading doctors I have never thought about finding myself sitting in a doctors office 6000 miles away from home because I was dismissed in my own country. But here I am, sitting in my neurosurgeon’s office at 7 pm and waiting for him to tell me how sick I actually am and shocking me with the possibility of spinal cord damage or worse and with the actual amount...Read More
Category: Invisible Strength – Stronger 2 Gether
ALLYSA SEELY: ON THE ROAD TO RIO – Story of a Paratriathlete with Ehlers-Danlos syndrome (EDS). Those who know me, know that I’m a huge fan of sharing stories of hope, strength, and perseverance — no matter how big or how small the accomplishment. I have a few friends who also share my passion, and recently I’ve joined with my friend Donna from Beating Limitations. Our hope is to shine a light on incredible stories from within our community – stories that you often do not hear about, but cannot be inspired and motivated, not to mention filled with hope...Read More
Living with Lyme Disease The story shared below is a guest post from my friend Lauren. Lauren and I went to highschool together and before Brian and I moved our family to another town, Lauren and I would see each other fairly often. We would get together for playdates, or a night out with a few other friends of ours. At that time, my life and work in the Ehlers-Danlos and chronic illness communities was not something that was often a topic of conversation with any of my friends, especially ones outside of the EDS and medical world. Most friends probably...Read More
How are you handicapped? Guest post by Monica Kaye Snyder Today was my pre-op appointment with my primary care doctor. I didn’t sleep much last night because of this strange vibration in my arms and horrible legs spasms. I felt very uncomfortable this morning, but I was thrilled the girls had the day off school and let myself off the hook for a few basic things that usually drive the routine of my days including making my bed. This is huge progress for me. I cannot explain this any other way except the pheresis threw a big bucket...Read More
What is an invisible illness? Personally, I don’t consider myself sick or even chronically ill, but I do feel like I have an invisible condition (actually conditions). I’m pretty sure that there are a number of us with EDS who do not identify as being “sick” and honestly, I don’t want to. I do not care to prove my suffering to others, nor do I care to have people believe me. I started talking about EDS and my personal journey more and more, because I saw how much misunderstanding there was in the medical community about Ehlers-Danlos syndrome and...Read More
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Integrative Wellness Retreats: Wellapalooza
Move More. Move Better.: Moving Naturally with Hypermobility
(Top left pic is proper form for hip hinge – others are examples of going too far) The “hip hinge” is the perfect natural movement exercise that can be done easily. The point is to feel and learn how to engage the muscles that attach to your pelvis/SI joint and knees and to help prevent […]
Yoga for Hypermobility : The Hypermobile Yogi
- Gentle Hatha Flow Yoga for Hypermobility and Chronic Pain with Kendra Neilsen Myles of EDS Wellness
- Practicing Yoga Safely with Hypermobility
- Mind-Body Strategies for Hypermobility with Chronic Pain Class at The Mindfulness Center with EDS Wellness
- Dr. Alan Pocinki’s Presentation at the EDS DC Support Group Meeting (March 2017)
- #EDSFitTip – Standing leg exercises for Hypermobility and Dysautonomia or POTS
Mast Cell Research: Mast Cell Research
‘Twenty Minutes’ by Karen Smith-Will – Winner of Our Team Taylor/Mast Cell Awareness Tank & Mast Cell Story Giveaway!
Thank you to everyone who participated in the Mast Cell Research ‘Team Taylor/Mast Cell Awareness Tank & Mast Cell Story Giveaway!’ We are excited to announce that our winner, chosen at random, is Karen Smith- Will! Karen’s story ‘Twenty Minutes’ is shared below. “I coughed before the first song. That doesn’t bode well. Not surprising, but […]