I think sharing our stories are so important and I know that reading them helps so many of us not feel so alone. We also learn more information, gain deeper understanding and feel as though there IS someone who understands. The story below is a great example of what those with EDS face, both from the aspect of daily struggles when “you look fine,” to challenges faced in the healthcare community when trying to find an adequate diagnosis and/or anyone who understands that GI issues ARE related to the hives you get when you are cold (or from...Read More
People often ask me, “How is EDS diagnosed?” Here’s a pretty simple explanation: EDS or Ehlers-Danlos Syndrome is usually diagnosed by a geneticist or through the genetics department of a large hospital. However, not all geneticists or genetics departments are up-to-date on the latest criteria for diagnosing EDS. An EDS diagnosis used to require a skin biopsy, but now can be done through a clinical assessment in-office, called the Beighton Score and/or the Brighton Criteria when an individual scores lower on the Beighton Score. In 1997, a nosology was written at the Villefranche International Conference that refined the types of...Read More
Long before I knew that I had EDS, I figured out how crucial exercise was in the management of my chronic fatigue, physical strength & stability and overall well-being. At the time that I was diagnosed with EDS, I had already been working out consistently for over 10 years (since age 11yo), so imagine my surprise when I was told to stop doing what I had been always doing exercise-wise and just do arm circles for strength. Umm…. ok, right. ‘Cause that will work for someone who already has some muscle and has working out pretty hard daily. ...Read More
While I’ve never been in a wheelchair or bedridden, I’ve been darn close. However, I made a pact to myself as a kid to live my life differently than my Gram (AKA – Grandma with the pills) and my mom because they were pretty much bedridden my whole life. My parents separated when I was 2 to 3-years-old and my siblings were much older, I was around my grandmother & my mom constantly. Due to my Grandmother’s health issues and my mom always wanting and needing to lay in bed if she wasn’t working, I honestly just thought that...Read More
Could “Vaginal Weightlifting” be beneficial for Pelvic Floor Instability, a common issue faced by many women with EDS?
Say what?? That’s right, “Vaginal Weightlifting” to help a variety of issues women may experience “down there,” including Pelvic Floor Instability. Awesome mental image – right? As someone who has long suffered with various issues “down there,” this article immediately peaked my interest. And because I am in the process of putting together an article for another blog discussing the variety of issues those of us with Ehlers-Danlos Syndrome (EDS) and/or Mast Cell Activation Syndrome (MCAS) may be blessed with just because we are women, I wanted to read about these 10 benefits. You can read for yourself below....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 […]