National Rare Disease Day: What Is Prune Belly Syndrome?

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Me and fellow Prune Belly Syndrome survivors in a conference we had a few years back.

While talking about the topics for our informative speeches in my speech class back in College, many people had ideas that, to be honest, felt cliché.

I, on the other hand, decided to stay close to home and do a topic that means a great deal to me. For my informative essay, I decided to speak on Prune Belly Syndrome. Yes, I’m sure many of you reading this right now are thinking “What are you talking about?” and that’s exactly the reaction I received from my classmates back then.

Just when I was going to reply to the comments, my teacher interrupted me and simply said “oh it’s just like wrinkled abs or something like that,” and began to laugh.

You read that right, the teacher laughed. This may have been six years ago, but remembering just how she laughed, and in turn made everyone else laugh with her, hurts me.

Little did they know, I have Prune Belly Syndrome (Not many people knew, safe to say if you’re reading this you know).

You’re most likely wondering what Prune Belly Syndrome is, well you can google it. Prune Belly Syndrome is a rare, genetic, birth defect affects about 1 in 40,000 births, in which 97 percent of those affected are male.

Prune Belly Syndrome is a congenital disorder of the urinary system, characterized by a triad of symptoms. The syndrome is given its name largely in part to the mass of wrinkled skin that is often (but not always) present on the abdomens of those with the disorder, giving the belly the look of a prune.

No one knows the origin of Prune Belly Syndrome, there are two hypotheses out there (They may bore you, but you’ve gotten this far so why not finish strong, champ?):

1) Urinary tract obstruction: A hypoplastic or dysplastic prostate causes an obstruction of the urethra, thereby creating a urinary tract obstruction leading to overdistension 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.

Let me preface by saying, I’ve been blessed beyond belief.

I don’t have it half as bad as many of the other people I know with Prune Belly Syndrome. I began defying the odds from day one in my life.

To say I’m perfect would clearly be a lie. I have back problems due to Prune Belly Syndrom, I have some kidney problems, and a few other problems as well. Nevertheless, God’s sovereign hand has been in my life from a very young age and I sometimes forget just how marvelous and glorious He truly has been to me.

Why would a college teacher make a joke about something as serious, and deadly, as Prune Belly Syndrome? Many children with Prune Belly Syndrome have a very low life expectancies due to their kidney failures, among a myriad of other issues.

My own parents were told by the doctors that they should have aborted me due to the high probability of death within a few weeks. I’m a miracle story, and every day I thank the Lord Almighty for this.

Why don’t many people know about Prune Belly Syndrome? Simple, no famous celebrity has Prune Belly Syndrome, it’s a sad but true. Parkinson’s has Michael J. Fox, and HIV/AIDS has Magic Johnson, while Prune Belly Syndrome has no one of that stature to talk about it on live television or donate big money to help raise awareness.

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 works, we go for the trend. We go for the Ice Bucket Challenges but never look back and see other diseases that could be as serious but will never get the same amount of spotlight.

Since High School, I made it my mission to step up the plate and tell as many people as I can about it. It’s difficult since it’s not one of those conversations you just randomly have around the cooler at work, but little by little people hear about it and are amazed at my story.

I want teens that have Prune Belly Syndrome to be able to talk to me, I want to be there for them. I know how nasty kids in the world can be to someone that doesn’t look like them. In a world where looks are everything, people with Prune Belly Syndrome feel left out, for obvious reasons.

It was hard for me during elementary, middle and even sometimes, high school. Kids are so judgemental and if you don’t look like the status quo, they make fun of you. I want kids with Prune Belly Syndrome to understand they are not alone. I’ve gone through all the nastiness they may be going through and I want to be there to tell them, “It’s okay pal, you’re special.”

I want parents to look at me and say “If Pedro made it, why can’t my son?”

For the longest time I wondered why me, but ever since that teacher back in College made fun of Prune Belly Syndrome, I decided to help raise as much awareness as possible. I want to help in whatever way I can with younger kids or teens that may have Prune Belly Syndrome.

*If you or your kid has Prune Belly Syndrome and want someone to talk to, go to the contact me page and shoot me an email. I’ll be glad to talk to someone.

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