All posts filed under: Living with EDS

Life by Design – Gratitude for doing what I love 

Published by HypermobileYogi

I started my first business 10+ years ago after I had baby #1 after I was diagnosed with EDS. This business was also started after being on long-term disability from my “career” job, one that I loved, and after facing the decision to accept or decline permanent social security disability at age 27yo. I declined it. My choice — being disabled at 27yo didn’t feel right for me, and working, doing something, helps me manage my health and well-being. I also needed to help support my family, be available for my son (only one baby at the time), and have flexibility around my husband’s job. I figured I could find something that I could do on my own, and I did. Five years ago, I started a 2nd business to serve the community that I was now a part of — both as a patient and volunteer. I wanted to use my degree to help disseminate education and work with people on how they could best help themselves, if they didn’t have a physician or PT …

The Constant Whooshing in My Head …..

Published by HypermobileYogi

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. …