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

This One Goes Out to My Docs #NHBPM Carnival

Written by Katie. Posted in Diagnosis Path, Ehlers-Danlos Appointments, Medical Team, Other Appointments, POTS Appointments

Topic: What’s something your doctor taught you?

Well, as I am sure it is true for many of you, I have many doctors.  Each one has taught me so much along the way as I have learned to manage both EDS and POTS.  Finding such a great team of doctors did not happen overnight.  It took a lot of travel, a lot of help, and a lot of patience.

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. “

Ehlers Danlos in South Bend

Written by Katie. Posted in Ehlers-Danlos Appointments

After seeing Dr. Cantieri, we headed to South Bend.


My next appointment was with Dr. Lavallee, who is a sports medicine doctor, who also specializes in Ehlers Danlos.  He actually has Ehlers Danlos; the classical type, meaning it affects his skin and he also has the extreme joint hypermobility.  I had no idea what to expect from this appointment, except I was pretty excited to talk to a doctor who actually lives with what I am living with.

EDS Tweets

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POTS Tweets

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