Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Fate, Family, Answers, & Genes

Written by Katie. Posted in Ehlers-Danlos Awareness, Family, Memorable Experiences, Questions

Ehlers-Danlos Syndrome is genetic.  Of the genes. Often inherited (though not always). This, I get.

What I have always wondered is if my EDS was in fact inherited, where in my family did I get it from?

My siblings don’t have it.  My parents don’t have it.  For three years, I have not known of anyone on either side of my family who has EDS.

Hard is What Makes it Great

Written by Katie. Posted in Challenges, Ehlers-Danlos Appointments, Favorites, Inspiration, Memorable Experiences, Thankful

If you have been following, you know I had my chance to cross off one of my goals for the year last week, which was to work out with the incredible Dr. Lavallee.   Back in January I had asked him at my yearly EDS check-up if he would ever be willing to work out with me.  He laughed a little, I think taken by surprise, and said, “But I don’t think you need to learn many of the exercises I do…I think you are doing well managing your EDS so far on your own. “

EDS Tweets

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POTS Tweets

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