I first learned about Chronic Fatigue Syndrome in 8th grade, when my boyfriend’s mom owned a popular local fitness program and she also suffered from Chronic Fatigue Syndrome. I remember that it was a condition not widely understood and it was a huge deal with there was a write-up in our local paper about her …
Proper neck aligment during activity and exercise is essential for anyone, but especially important for those of us with Ehlers-Danlos Syndrome. There are many of individuals with EDS, who have longer necks and due to the laxity of our connective tissues, also suffer from CranioCervical Instability (or CCI). Therefore, learning proper neck alignment, techniques and …
Proper neck alignment during acitvity and exercise Read More »
#EDSFitTip – Try focusing on exercises that can work your whole body or what are sometimes called functional exercises. These exercises work the whole body, help with the overall stability of our bodies & help us move with more ease through daily life. This lunge exercise helps strengthen the feet, ankles, legs, core & upper …
As someone who has been an exercise & health fanatic my whole life, I love seeing people find ways to incorporate proper exercise and nutrition into their daily lives. Of course, I do realize that there is not a “one side fits all” approach and everyone has to find what works for them. However, regular …
In addition to putting this website/blog together (finally), I’ve been working with a good friend on a very special project called, “Our Stories of Strength – Living with EDS.” Our Stories of Strength- Living with EDS is an anthology of stories of those who have Ehlers-Danlos Syndrome and who have found ways to persevere. …
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 …
A true "Our Stories of Strength – Living with EDS" – sharing from EDS UK's Facebook Page 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 …
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 …
"Exercise is Medicine for Ehlers-Danlos" – Webinar Summary 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 …
When living with EDS, You have to Think Positive, Believe & Just Keep Moving Read More »
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 …
