“oh it’s just like wrinkled abs or something hahaha”

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.

This is a PBS baby. Isn't he cute?

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,

Pedro

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10 thoughts on ““oh it’s just like wrinkled abs or something hahaha”

  1. My daughter has Prune Belly Syndrome, among many other complications, and is 4 months old. I was searching to find pictures of babies and adults with Prune Belly so I can see what her future may look like. I too had never heard of it before she was born. I’ve discovered that she is a rare case (in more than one area) because Prune Belly is most often found in boys. I think that may be because the bladder obstructions are more complicated in girls and if not found early enough, the kidneys fail and the baby dies in utero We were blessed to find the right doctors before her birth to perform in utero shunt placement which saved her life. You are right that most people do not know anything about it or the serious complications it causes for those affected. I hope that she will be able to meet others like her, so that she will not feel alone in the future.

  2. Hi! I have a 7 year old son with PBS. He is super active, and his urologist said it’s ok for him to play sports. Did you wear any additional protective gear when you played sports. I saw on PBS.org they had links to protective garments. Would you mind sharing your experience in sports with me?

    Thanks!

    Kathleen

  3. Pedro,

    FIrst let me say…SHAME on that teacher!!

    34 years ago this past March I gave birth to fraternal twins. The first year of their life I kept telling their pediatrician…”Justins abdoman is so soft and when he cries you can see lumps in his abdominal area”. He would just say…”he will grow out of that.” Well Justin’s testies were undecended which can happen in males without PBS and the doctor told me if they didn’t come down by the time he was 1 YOA that he would send him to a urologist. Of course they never came down so we were scheduled to see a urologist. One look at Justin and that doctor said..”OMG this baby has PBS.” It was only the second time in his career that he had seen it…the first time was in his internship at the Mayo hospital in Rochester, MN. Within that 2 hour visit he had made calls to the Mayo Clinic and we were scheduled to see the head of the urology dept the following week. We were told then that they had to wait till he was 2 to do his surgery….that was a long year….but the surgery went well and we were able to bring our baby home with us. BTW…Justin’s belly looked just like the picture of the baby you posted…very mild case….but one kidney was underdeveloped he had curvature of the penis which was straightened with the surgery to decend his testies. Justin is sterile because of the PBS.

    I wish you well Pedro….it’s wonderful you are there to help so many.

    Blessings to you and yours.

  4. Am extremely happy n encourgd by Pedro. My son is 4 months n has pbs. He feeds well, has never got sick n he z active. I was told by docs dat my son wil not live when i was pregnant. Today , i hold my son n thank God. Thanx alot Pedro.

  5. Pedro, I was so pleased to Google “Eagle Barrett images” today and see a photo of my son!! He is 8 now and doing great! I love that you have used this wonderful photo of him, because there are photos out there that I believe are very discouraging to (potential) parents of PBS kids. All the best to you, and hope to see you at a future PBSN convention! Our last one was in San Diego, but we hope to get to NJ this year July 29-Aug 2, 2015 (http://prunebellysyndromenetworkinc.camp9.org/page-1187415).

  6. my son has the mildest case I’ve ever “read” about. He wasn’t diagnosed until he was 6. We are very lucky. He had a vesicostomy, which was taken out when he was 2. His bladder is thicker walled than normal, but has muscle, his abdomin is a bit weaker muscled than normal which makes him look potbellied so he’s self conscious about fat comments, ha had surgery when he was 7 for his undescended testicles, but that appears to be all. I saw a specialist when I was pregnant because they originally thought that his bladder was a tumor. My son is now 27 and doesn’t live any different than any other man his age. Blessings!

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