A 30 Year Mystery is Solved with my VEDS Diagnosis: Now I’m Taking Steps to Make a Difference

My father died of an aortic dissection when I was seven years old. For thirty years, none of us knew why. The turning point was when my own son was born in 2014.

My son, Alex, had some complications at birth and was on a feeding tube for several months after he was born. He was aspirating when drinking milk, and the nutrients weren’t really going where they needed to go. Fortunately, it was only for a few months; then he passed his swallow studies, and we eventually got him off the feeding tube.

However, the geneticist thought it was important to find the underlying cause of Alex’s issues, and suggested doing a full genetics panel on my wife and me to see if anything rare or unique showed up. He was right. The genetics test showed that I have VEDS, a rare condition that I had lived with for over 35+ years of my life – without knowing.

The geneticist, who knew my family’s medical history, then connected the dots between my diagnosis and my dad’s passing at the age of 49 from a ruptured aortic aneurysm. Something doctors told me my whole life — that my dad didn’t pass away due to a genetic cause — just wasn’t accurate. It was genetic, and now three generations (that we know of) have (had) VEDS.

When I was diagnosed with VEDS in 2016, I learned there are several different types of EDS (Ehlers Danlos), and this one — was previously known as Type IV — is vastly different from the other types based on the vascular component. Unfortunately it is also very serious and can cause organ ruptures, aneurysms, and dissections that can be life-threatening. Five years later, I found out personally how scary this condition is.

In January 2021, completely out of the blue, I suffered an acute dissection of my right iliac artery leading down to my femoral artery. Within minutes my leg and foot started to go numb. Within an hour or two of getting to the hospital, I was in surgery. They did a quick CTA scan and confirmed that I had a 3.5 inch dissection of my right iliac artery leading down to my femoral artery, which was not properly allowing blood flow to get to the rest of the leg and foot, hence the numbness. Thank God the five hour surgery was a success.

What a whirlwind experience of emotions. My surgeon’s name was Dennis and so was my father’s. Don’t try and convince me that someone wasn’t looking over me during this time, making sure everything was going to be OK. Because I know. I felt it. Miraculously, a couple of days later, I was home.

Turning Crisis into Opportunity

While my story started with a tragedy, I am grateful that my son was diagnosed early and then I was able to get a diagnosis and survive a very serious and scary episode. Not everyone is as fortunate. That’s why I want to use this experience for great things. I want to raise awareness and funds to help the VEDS community. People need to know about this condition and we need more money for continued research. The Walk with DeCo was then born.

The Walk with DeCo mission is simple: Walk 4,000,000 steps and raise $40,000 for VEDS in 2021. How can you help? Donate if you can, any amount helps! You’ll be helping me, my family, and all families impacted by this serious genetic condition. Please like all of my upcoming posts and videos on social media to help spread the word about this mission! Also subscribe to my podcast and follow the journey to 4,000,000 steps / $40,000.

I want to reach four million steps this year and, in the process, raise awareness and funds for VEDS organizations supporting this genetic condition. You can read more about my mission at walkwithdeco.com

Why four million steps? I thought a step goal was very appropriate for this year. As much as I’d love to run another marathon, I don’t think those types of grueling events are in my future anymore. So I have to average somewhere between 12-13,000 steps per day the rest of the year to hit my 4 million number. That is about the range I was at in 2020 before my surgery. So as we say in our mastermind, I’m living out right over my edge, without pushing myself over.

By donating to this cause and supporting me along this journey, you are not just helping me, you are helping my family, and all the other families impacted by this condition. Thank you for listening to my story. I wish only the best for you and your families and loved ones throughout this upcoming year. Thank you, love and blessings to all

Living Life with VEDS

Once I was home, I was hyper-focused on my physical recovery for a couple of months. It wasn’t easy being taken out of my work at a moment’s notice, especially because it’s a company that I am very passionate about. But, these types of serious events have the power to shift perspectives (for the better) and reveal what the most important things are in life. And for me, that’s family. That’s my wife. That’s my two kids. That’s my extended family and relatives and all of my close friends. They all have been the inspiration for my recovery.

Certain normal everyday tasks are difficult, and I probably still have a good two to three months of recovery left, if not more. I have to exhibit a great deal of patience with this recovery, and as I always joke, growing up in a household of all women, I’ve had a lot of practice and training with patience. I’ll be honest though. Some days I have it, some days I don’t. That’s OK, I know it’s a marathon and not a sprint.

I try to keep everything in perspective though. I try to take the glass half full approach. Plus, I have an amazing and supportive wife who means the world to me. Knowing how my father passed away, and how it was pretty sudden and out of nowhere, that does sometimes keep me up at night. We’ve talked about it on some VEDS support group calls. We all feel at times like an imaginary sniper is locked in on us waiting to fire, or for me personally, I’ve described it as feeling like you’re a ticking time bomb, just waiting for the other shoe to drop.

But here enters the power of reframing. I have one of my fellow brothers of my men’s mastermind group to thank for this. Soon after my surgery, I had the opportunity to present my story to the group and they were there to support me in a big way. I explained this feeling of the “ticking time bomb.”

After he heard my entire story, he said,”DeCo, I don’t see you as a ticking time bomb. You went through a traumatic event, got through it, and here you are telling your powerful story just shortly thereafter. You’re not a ticking time bomb. You’re a bomb disposal technician.”

And boom, there’s the power of the reframe right there. That subtle reframe is paying long-term dividends on how I positively go through life with this condition. And I hope it can help others with this condition or any other condition for that matter.

I want to do the Walk for DeCo for my family, for all people with VEDS, or any other genetic or rare condition. I want to take this crisis over the last few months, and the bigger picture over the last handful of years, and create an opportunity. To inspire others. To bring awareness to VEDS. To be a role model for people who have to live with this condition. These are my reasons.

-Mike DeCoursey