Saturday, February 10, 2024

Strength Against VEDS - my new cause

 

This is my son, Rob.  He's the one on the right.  He is one of the most generous, articulate, intelligent, and funny people I know. I'm not just saying that because he's my son, it's legit :-)

You may already know him.  You're lucky.

What you may not know is that he has a genetic disorder called Vascular Ehlers-Danlos Syndrome.  I'll provide more details below. Suffice it to say, it's a very shitty disorder.  In short, people with this disorder don't produce enough collagen.  Collagen is what helps tissues like blood vessel walls and internal organs stay together.  Without collagen, your tissues are prone to tear and rupture.  That's bad...really bad.

We only learned that Rob had this disorder in the last few years.  I only recently learned in the last month, that there are organizations that are trying to help.  I will get to my point, I learned that there are a family of connective tissue disorders and they're pretty rare.  In fact, we didn't know these organizations existed until Rob had emergency, life saving surgery in December.  The vascular surgeon connected us with the Connective Tissue Disorder group at Stanford Medical. 

Now that I know that this group exists, I dug into how they're funding research. They raise funds for families and research.  I am committing to this cause.  My first order of business is to start raising funds; I have signed up for the March for Victory Event on May 4th this year.   Please help me raise as much as I can by supporting this cause.  The link is conveniently provided below

Please Support the Strength Against VEDS team

More about VEDs - get your hankies ready.

If you want to know about how this disorder, visit the VEDS Movement community stories page
If you're like most people, you probably didn't know that this existed until you read it today.  Tragically, many people find out when someone close to them dies because they've had a burst blood vessel or organ.  A lot of times, that doctors don't even know about the condition.  You read the stories and you can't help but feel like you've been punched in the gut.

What you also learn from these stories is that many people discover that they've been affected by VEDS and they never knew it.  

Here's my personal experience

In the mid-80s, my brother-in-law passed away from a ruptured liver.  At the time, it was attributed to a weakened liver because he had hepatitis a few years before. In 1987, my father-in-law passed away from an aortic dissection that, after surgery, threw a clot.  They said it was because he was under a lot of stress. In 2010, my wife Sherri, collapsed and died from a burst cereberal artery.  They said in the ER, "it was the finger of God".

Now we know what it was. 

I know several other people affected.  Rob gave me permission to tell his story.  Others may too.  You'll hear those, if they choose.


Thanks for listening.  Reach me if you want to know more.
Steve

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