Mike “DeCo” DeCoursey almost lost his entire leg due to a rare, life-threatening disease that he wasn’t aware he had. What was a crisis for DeCo turned into an opportunity, a mantra that he would adopt as the basis of his campaign to raise awareness of a little-known genetic disease.
DeCoursey lived his life as a healthy, active individual. It wasn’t until the age of thirty-seven that things changed. DeCo was diagnosed with VEDS (Vascular Ehlers Danlos Syndrome), a rare and serious genetic connective tissue disorder.
There are many types of Ehlers Danlos Syndromes. In the vascular classification, the syndrome mutates the COL3A1 gene, which is responsible for healthy human growth and development.
This gene produces the collagen, or connective tissue, that holds a person’s cells, organs, and tissue together. This connective tissue is found throughout the body in the skin, arteries, lungs, and other internal organs.
A person with VEDS can have issues in several of these areas. Because the integrity of the body’s collagen is compromised in people with VEDS, these tissues can tear easily, which can be life-threatening.
DeCo’s diagnosis sent him on a mission, not only to learn as much as he could about the disease for himself, but for others who may be living with the disease unknowingly.
DeCo created the “Walk With DeCo” Foundation as a way to raise money for VEDS research and use the leg he almost lost as a way to remind himself and others that “crisis equals opportunity.”
Dallas Express: What were your thoughts upon learning about your VEDS diagnosis?
DeCo: It was quite a shock to find out you have had this condition all your life, and up until that point, I had no symptomatic events associated with it.
It did however explain a thirty-five-plus-year mystery…My father passed away at the age of forty-nine from a sudden aortic dissection. The geneticist said, “Your father probably had this and passed it on to you…”
So they started me on full-body MRA scans, and soon after the first couple of scans they found aneurysms in my iliac arteries. No intervention was necessary at the time, but with VEDS you have to monitor the arteries with scans every six to twelve months to stay ahead of any issues before they become catastrophic.
Dallas Express: So tell us about the day you experienced a VEDS crisis.
DeCo: In early January of this year, I was feeling fine while picking out what shirt I was going to wear when I felt a funny tear. It wasn’t the worst pain I’d felt but I knew something wasn’t right…
Within a couple of minutes, I went numb down to my foot. My wife rushed me to the hospital…
I ended up having a three-and-a-half-inch arterial dissection where the walls of the arteries tore and blood flow wasn’t getting to the bottom portion of my leg and foot. In order to save [my leg] surgery was immediately necessary in order to repair the blood flow.
The scary thing with VEDS is there are no warning signs. I went for a walk that morning with the dog and it kinda happened out of nowhere.
But [in hindsight] there were some external factors [going on in my life], it was a pretty stressful time at work…which may have contributed to it because even though we don’t have high blood pressure, people with VEDS have to monitor it because high blood pressure can induce more pressure on the artery walls. We’re more susceptible to dissections and aneurysms so we’re put on a beta-blocker, even if our blood pressure is good, to avoid blood pressure highs and lows.
Dallas Express: When did you adopt the “crisis equals opportunity” mantra?
DeCo: The interesting thing about VEDS is, it’s a physical syndrome obviously, but it’s [also] a mental syndrome. People in the community often say you feel like a sniper is pointed at you or you feel like a ticking time bomb, but I try to reframe [that way of thinking] with the “crisis equals opportunity” mantra which I’ve been living since the surgery.
The big thing with VEDS is preparation. [Most of the time] people have their first event before even getting the diagnosis, which is even scarier, because you don’t know what’s going on. In my case, I knew to take it seriously and go right to the emergency room because I had already been diagnosed and if I hadn’t, I would’ve tried to tough it out.
Dallas Express: What was the time span between your diagnosis and the life-threatening event that sent you to the hospital?
DeCo: I was diagnosed in 2016 and the event and surgery happened earlier this year in January, so roughly five years.
Dallas Express: Let’s talk about VEDS research. Since it’s now well-known, is research happening?
DeCo: It is happening…but under the umbrella of “crisis equals opportunity,” I felt called to do more in the [VEDS] community,* definitely from a raising money and awareness standpoint…
As it pertains to research there are three main institutions that lead the way, Johns Hopkins in Maryland, the University of Washington in Seattle, and Houston.
There are only a handful of organizations and nonprofits that focus on VEDS and I decided to align with them [to] be that inspiration or beacon of light for the community because a lot of people get this syndrome and struggle with the mental aspect of having to live with this “invisible disease.”
I have five charities that I’ve partnered with and the funds that “Walk With DeCo” raises go to those charities for research.
While it’s a rare disease, we do feel like the number of people [with VEDS] is understated. [Donations] can fund more studies, conferences, bring more awareness to VEDS, and provide a better treatment plan for individuals that will produce more favorable outcomes and longer lifespans.
Dallas Express: Why was it important to start the “Walk With DeCo” Foundation?
DeCo: I was the CEO of a small software company when this all happened and while on short term disability I was terminated, which was a gift because I was able to focus on my recovery, and [it] got me thinking about what’s next for me and where my greatest energy could be applied.
I used my past business skills to create a formal, nonprofit, charitable organization that could have an audacious goal of raising $40,000, and something that would live on forever.
I called the foundation “Walk With DeCo” because of the physical component of walking four million steps, which I almost lost the ability to do, and I wanted to tie that gratitude to that goal of raising $40,000. We’ve reached the monetary goal and I’m currently on track to reach four million steps in a week.
Dallas Express: So now you have a new goal of raising $50,000 how can the people get involved?
DeCo: I’m doing a Zoom finale event where family and friends, and anyone who wants to join, can watch me achieve that four millionth step. Also, as a tie-in to the holidays, for each day we achieve $200 in donations, I’ll do my steps in a Santa suit.
Dallas Express: You’ve definitely taken a crisis and turned it into an opportunity! How can people continue to follow “Walk With DeCo?”
DeCo: I created a “Walk With DeCo” podcast with the hope to reach the person who may be suffering from a crisis, whatever it may be, and give them the inspiration or optimism, that it doesn’t have to be all bad, that maybe there is some good in whatever they’re going through.
Follow DeCo’s story at walkwithdeco.com and watch him take his four millionth step in an effort to raise money and awareness for VEDS.
*According to thevedsmovement.org there are anywhere from 6,000 – 8,000 people living with VEDS in the United States. That’s roughly one out of every 40,000 to 50,000 people. VEDS can affect all genders and ethnicities.
