Today in class, we were talking about what our informative speech topics were on and many people had, for a lack of better term, stupid topics.
I, on the other hand, decided to stay close to home and do a topic that means a great deal to me. I decided to do my informative speech on Prune Belly Syndrome. Yes, I’m sure many of you reading this right now are thinking “huh? what is that?” and that’s exactly the reaction i got from my classmates. When I was going to reply to the comments, my teacher interupted me and simply said “oh it’s just like wrinkled abs or something hahaha”.
Yes, she laughed at it and so when she laughed everyone else laughed with her. Words can’t describe how upset and angry I got with her ignorant comment.
Little do they know, I have prune belly syndrome (not many know.. well, now the do). What is PBS (Prune Belly Syndrome) you ask? well it’s “simple” to describe it to you. PBS is a rare, genetic, birth defect affecting about 1 in 40,000 births. About 97% 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 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 hypothesis 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 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.
So you know, I’m not that bad. I’ve been blessed beyond belief. I don’t have half as bad as many of the other people I know that have 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 problems, kidney problems amoung 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 still consider myself one of them.
So why would a teacher make a joke about something like that? If I was to say my speech was about Parkinson’s or HIV/AIDS she wouldn’t make a stupid joke about that would she? Well PBS is just like that, if not worst.
So, why don’t many people 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 Brian Grant (former HEAT player by the way), 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 and others, but compared to others diseases and such, 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 jugimental 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’m here. 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… 19 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 cliche but it’s true), I realized it’s not a curse but it’s a gift. So from this day on, I’ve decieded to help in whatever way I can with younger kids or teens that may have PBS. If you or your kid has PBS and they want someone to talk to, go to the contact me page and shoot me over and email. I’ll be glad to talk to someone.
Until next time, stay classy my friends,