In this episode I talk to Deborah, whose 9 year old son was diagnosed with Vascular Ehlers Danlos Syndrome (vEDS) at the age of five. We hear about the road to diagnosis, changes they’ve made to his daily life, and coping strategies. To learn more about Deborah’s books and to get one, visit http://www.amazon.com/author/daroach
Elastosis Perforans Serpiginosa. The three words that a dermatologist used to describe the ring-worm-looking thing on my arm that I had struggled with for a over a year. And the first three words I was given that gave an on-paper clue to my Vascular Ehlers Danlos Syndrome (vEDS). This had shown up on my arm …
Welcome to the first episode of Staying Connected! I started Staying Connected as way to connect with other people diagnosed or impacted by vascular Ehlers Danlos Syndrome (vEDS). In today’s episode, I talk to Bridgette, who was diagnosed in her early twenties following an angiogram that went terribly wrong. She needed twelve surgeries to save …
I should start this story by telling you I have a cat. A very anxious cat. Last year my apartment needed him out of the unit to do some work on the pipes. So I had him boarded for a few days while they did the work. He was not happy. After the project was …
I woke up at 2:35 am, slightly nauseous. The night before I had been out with my friends and had a few beers. It had been a stressful week, to say the least. I headed to the kitchen to get some water, and picked up a bottle of Pepcid (which I normally take every morning) …
I have heard this phrase many times in my life. Variations of the phrase. “You are your best advocate.” “The answer is always no until you ask.” “Ask for what you need.” During my struggle for a diagnosis I truly learned how to live by these adages. Prior to my neck injury in 2016 I didn’t …
In the fall of 2017, I was sitting in the ER waiting to find out if I had a dissected artery. A sudden increase in pain levels in my neck made it imperative to rule out a dissection. My new vascular surgeon had recently discovered my pseudo-aneurysm in my left internal carotid artery, and I …
In January of 2017, I was sitting with my brother over lunch and updating him on my medical situation. I had been living through a year of severe neck pain that came on suddenly one morning in 2016. My doctor diagnosed it as a muscle strain, but it wouldn’t get better. I was on a …