Faces of Dysautonomia
I dream of the day there is a cure! Understanding and awareness is key!
Posts Tagged ‘Dysautonomia’
EDS Inservice
Last Tuesday, was the Ehlers Danlos Inservice that the PT student who I have been working closely with put together for all of the other therapists. She had asked me to come to show the Beighton Scale (one of the ways I was diagnosed), and to help answer questions and provide information from a patient’s perspective. ?I was so proud of her~She put so much work into the presentation. It is always surprising to me how little is known about EDS in the medical world. This is why I was extremely THANKFUL to this student who took the time to educate the therapists, to help “make the invisible, visible,” and hopefully help other patients get to a proper diagnosis in a much more timely fashion than it took me.
The slides below are from her PowerPoint. Let me be clear~this is NOT my presentation. I did not put together these slides. The PT student did, and she was nice enough to share these and all of her other resources with me.
RDD
Happy Rare Disease Day everyone! I’m off to Mishawaka to celebrate with lots and lots of shots…or should I say injections 🙂
"Making the Invisible, Visible"
This pretty much sums it up. Honestly, the first thing I thought of when I watched this, was “Welcome to my world.” Out of all the videos I have watched and things I have read, this one has rang the most true for me…And she talks about struggling with POTS as well. I love, love, love that she is working towards a marathon. Makes me wish I could hug her.
POTS in South Bend
We spent so much time in Dr. Lavallee’s office, so we had to race to my third appointment a couple blocks over with Dr. Halleran, a cardio electrophysiologist. Dr. Lavallee referred me to him for POTS.
My appointment started with an Echo (which must have been fine because they didn’t say anything about it).
Dr. Halleran came in and listened to my history and my symptoms. He explained a lot about POTS and that he actually does not like the name POTS because this disorder has to do with a lot more than just tachycardia.