Would You Raise Awareness for this Cause?

By: Pedro Heizer

Although I strongly support ALS and the Ice Bucket Challenge, which has raised millions of dollars to ALS research, I can’t help but wonder if all of this is just because a few people are dumping water on their heads to follow a trend, or if these people are honestly interested in raising awareness.

Don’t get me wrong, ALS is a great cause, but I’m wondering if I could take a few moments of your time to introduce you to another very worthy cause.

Have you heard of Prune Belly Syndrome?

If you are like anyone I have ever told, the first thing you’ll say is, “what is that? Wrinkles in your belly?”

Well in a way, sort of.

What is PBS (Prune Belly Syndrome) you ask? Well it’s not “simple” to describe it to you. PBS is a rare, genetic, birth defect affecting about 1 in 40,000 births, and I’m one of those.

About 97% of those affected are male, and prune belly syndrome is a congenital disorder of the urinary system, characterized by a triad of symptoms. The syndrome is named for the mass of wrinkled skin that is often (but not always) present on the abdomens of those with the disorder (hence the name Prune Belly because your belly looks like a prune).

No one knows the origin of PBS, there are two hypotheses out there:

1. Urinary tract obstruction: A hypoplastic or dysplastic prostate causes an obstruction of the urethra, thereby creating a urinary tract obstruction leading to over distension of the bladder and the upper urinary tract, thus stretching the abdominal wall (causing damage to the abdominal musculature)
2. Primary mesodermal developmental defect: An insult between 6 and 10 weeks’ gestation disrupts the development of the lateral plate mesoderm, from which arises both the abdominal wall and genitourinary tract (including the prostate). This is currently the dominant theory.

So you know, I’m not that bad. I’ve been blessed beyond belief.  I don’t have it as half as bad as many of the other people I know that suffer from PBS. I literally began defeating the odds from day one of life and that’s why I live with the “Fall Seven Times, Get Up Eight” motto on my wrist everyday to serve as a constant reminder of that.

Many of the kids with PBS have back and kidney problems among many other things. I on the other hand, do have some of that but not to none of the extent that these other kids have, but I consider myself one of them.

Growing up, I would always hear jokes about PBS and how “it’s just wrinkled abs”. But I ask you, would someone make a joke if I told them I had Parkinson’s or HIV/AIDS? Probably not. Well, PBS is just like that, if not worst. In fact, over 30% of kids who are effected by PBS die before their second birthday due to a myriad of complications. Overall the PBS mortality rate  is 60%.. Think about that for a second, 60%.

So, why is it that many people don’t know about it? Well it’s simple… No one famous has PBS, it’s a sad truth but a real one. Look at Parkinson’s there is, former Miami HEAT player Brian Grant, Michael J. Fox, and Muhammad Ali. HIV/AIDS has Magic Johnson and so on. PBS has no one of that stature to talk about awareness and other things like that.

Yes, there are organizations out there helping like prunebelly.org, but compared to others diseases, we are very behind in support. It’s just a sad truth. I wish it wasn’t like that but that’s how our society is like nowadays.

Me, well I have decided to step up the plate and tell as many people as I can about it.

I want to raise awareness and I want teens that have PBS to be able to talk to me, I want to be there for them. I know how hard the world can treat people. In a world where looks is everything, people with Prune Belly feel left out… When was the last time you saw a Vampire or Werewolf movie with a Prune Belly kid playing the lead role?

It was hard for me during elementary, middle and even sometimes, high school. Kids are so judgmental and if you don’t look like the status quo, they make fun of you and I want kids with PBS to understand they are not alone. I’ve gone through all they have been going through.

The fact that I’m not as sick as any of the other PBS patients makes me even more of a believer that I’m the right person to be here for them. I want parents to look at me and say “If Pedro made it, why can’t my son?” Many of these babies with PBS die because of renal failure so many parents freak out about the life expectancy of their kid.

I’m here to say this, the doctor told my parents I would die as soon as I left the womb… 23 years later I’m alive and well with no problems whatsoever.

For the longest time I wondered why me, but now I realize it, (this will be cliché but it’s true), I realized it’s not a curse but it’s a gift. So from this day on, I’ve decided to help in whatever way I can with younger kids or teens that may have PBS. So please, if you aren’t just donating money because it’s trending, please consider donating to the Prune Belly Syndrome Network as we try to find a cure for this very serious disease. The link to donate again is: http://prunebelly.org/donate/research-donations/