Alice Ambrose’s First 20 Years With Bladder Exstrophy

Alice Ambrose is a role model and peer supporter for the ABC community nationwide.

Alice Ambrose is a role model and peer supporter for the ABC community nationwide.

Editor’s Note: Bladder exstrophy is a rare congenital birth defect that causes part of the bladder to be present outside of the body. Treatment includes surgical correction, but often leaves the patient with long term urological issues.

Alice Ambrose was born with bladder exstrophy and was left with an ostomy. She hid this from her peers for 20 years, but eventually told everyone after reconstructive surgery and an extended hospital stay. Alice has learned to be brave and honest when it comes to her condition and sets a great example about living a positive life. Part 1 of a 5 part series.

I was born in Seattle, Washington with bladder exstrophy. I grew up in Bellevue, a suburb of Seattle and had a very happy childhood. My mom and dad were loving, supportive and made sure I lived a normal life. I participated in the same activities as other kids and never felt singled out.

Since I’d never known life without bladder exstrophy, I didn’t feel different, despite the fact that I had worn an ostomy since I was 2. When I started going to sleepovers and pool parties in elementary school, I realized that my friends didn’t have an ostomy like I did.

At the time, I wasn’t old enough to change my ostomy bag, but as I got older, I learned to take care of it myself so I could enjoy more extracurricular activities without worrying. My mother helped me find pajamas that hid my ostomy and sewed me a swimsuit with panels so that I could swim and enjoy pool parties.

Alice hid her condition from her peers for 20 years.

Alice hid her condition from her peers for 20 years.

I had to deal with several issues during school like a leaky bag or not participating in gym class because I was embarrassed to shower in front of my peers. None of my friends or the other students I went to school with knew about my condition. I never wanted my ostomy to slow me down or prevent me from doing what my friends were doing.

However, when I was 20, I underwent reconstructive surgery. I hadn’t had surgery since I was 4. Once I finally told my friends about my condition, I had a difficult time because I’d never had to face the fact that I was different. I still struggle with this realization.Explaining bladder exstrophy is a challenge, but I was ecstatic when my friends offered support and didn’t treat me any differently.

I did have an issue with a past boyfriend who didn’t know about my condition. When I told him, and mentioned that bladder exstrophy may prohibit me from having children, it changed our relationship. I realized that he wasn’t worth it because it’s important to be with someone who will accept me for who I am. 

My dad always shares inspirational quotes and thoughts with me. One of my favorites is, “Successful people search for challenging opportunities to change, grow, innovate and improve.” (author unknown).

Another is “Attitude: The longer I live, the more I realize the impact of attitude on life. Attitude is more important than facts, than the past, than education, than money, than circumstances, than failures, than successes or than what other people think or say or do. Attitude is more important than appearance, giftedness or skills and will make or break a company. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our pasts, the fact that people will act in a certain way or the inevitable The only thing we can do is play on the one string we have, and that is our attitude.  Life is 10% what happens to you, and 90% how you react to it. We are in charge of our attitudes.”

Editor’s Note: Because Alice understands the challenges that children face with their peers when they have bladder exstrophy, Alice remains involved in a national association called the Association for the Bladder Exstrophy Community. As part of this organization, Alice helps offer summer camps for the families and children who belong to ABC.  Here’s a video from one of last year’s summer camps:

Next: Alice Ambrose Says Life Is All About Being Grateful For What You Have

About the Author: For the last 12 years, John E. Phillips of Vestavia, Alabama, has been a professional blogger for major companies, corporations and tourism associations throughout the nation. During his 24 years as Outdoor Editor for “The Birmingham Post-Herald” newspaper, he published more than 7,000 newspaper columns and sold more than 100,000 of his photos to newspapers, magazines and internet sites. He also hosted a radio show that was syndicated at 27 radio stations; created, wrote and sold a syndicated newspaper column that ran in 38 newspapers for more than a decade; and wrote and sold more than 30 books. Learn more at http://www.nighthawkpublications.com

UroMed Partners With the Spina Bifida Association of Georgia to Send a Family to the 2012 National Spina Bifida Conference

UroMed has teamed up with our local chapter of the Spina Bifida Association here in Georgia to help send one lucky family to the National Spina Bifida Conference in Indianapolis, IN that takes place June 28-July 1.  As an ongoing sponsor of SBA events nationwide, UroMed is thrilled to support Spina Bifida families in our local community through this contest.

In addition to sponsoring this trip, UroMed is also a Bronze Level sponsor for the overall National Spina Bifida Conference, and we are also sponsoring the Kids’ Camp that takes place at the event each year.

Join us in Indianapolis this year!  Contest details below – learn more at www.spinabifidaga.org.

“Win a Trip to National Conference in Indianapolis” RULES AND GUIDELINES

All members of SBAG that are residents of Georgia and at least 18 years of age are eligible to win.  To participate, you must submit your current database information to SBAG. 

The current information needed is as follows:

If you are a parent of a child/children with Spina Bifida, SBAG needs the following information:

  • Parents’ names
  • Current mailing address
  • Phone number(s)
  • Email address
  • Name and date of birth of family member with Spina Bifida
  • 2 greatest SBAG needs or interests

If you are an adult with Spina Bifida, SBAG needs the following information:

  • Your name
  • Current mailing address
  • Phone number
  • Email address
  • Your birth date
  • 2 greatest SBAG needs or interests

The information must be emailed to sbag@spinabifidaga.org  or left on a voicemail or in person at 770-939-1044.  Once SBAG receives your information, they will put your name in the drawing.  This information must be received no later than May 18, 2012

The winner’s name will be drawn on May 20, 2012 at the Spring Fling Picnic in Alpharetta, Georgia.  You do not have to be present to win.  The winner will be contacted by phone or email.

Gearing Up for the 2012 National Spina Bifida Conference

Gearing Up for the 2012 National Spina Bifida Conference

“Win a Trip to National Conference in Indianapolis” PRIZE INFORMATION

The UroMed-sponsored trip to Indianapolis will cover the cost of a family of four.  The cost will cover gas from Atlanta, Georgia to Indianapolis, Indiana (approximately 534 miles), hotel for 3 nights, hotel parking, 8 meals,  and conference fees for up to four family members.  The hotel does not include incidentals or wifi charges. Expenses covered not to exceed $3,000.

Winners will be announced on May 20, 2012 at the Spring Fling Picnic in Alpharetta, Georgia.  The winner will also be announced on Facebook and on http://www.spinabifidaga.org.  Additionally, the winner will be contacted by phone or email.  If the winner is unable to attend the conference, then a second name will be drawn.  The prize cannot be exchanged for cash.  Vouchers will be provided to the winner for the trip. 

This contest is void where prohibited by law.  All participants assume the total responsibility of knowing their local laws in regard to this contest and are subject to any local or state laws.  Spina Bifida Association of Georgia and UroMed accept no responsibility for making these individual legal determinations.

“Win a Trip to National Conference in Indianapolis” DEADLINE

Submissions of database information must be made between May 3, 2012 and May 18, 2012.  The winner will be officially announced on May 20, 2012 at the Spring Fling Picnic in Alpharetta, Georgia.

Spina Bifida Association of Georgia and UroMed  – Rights and Indemnifications

By entering the drawing, the participants agree to indemnify and hold harmless SBAG and UroMed, its affiliates, employees, and officers from any and all claims, issues, losses or actions emanating from, arising out of, or related to the “Win a Trip to National Conference in Indianapolis” contest.

SBAG and/or  UroMed has, at its sole discretion, reserved the right to terminate, suspend, or modify the contest.

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