More than 100 bladder exstrophy patients receive life-changing treatment from international team

A-BE-C’s executive director, Pamela Block, with patients receiving treatment at the Exstrophy Repair Workshop in India

Approximately 110 children with bladder exstrophy receive life-changing treatment and care at the international eight day event

Safe, affordable and timely treatment can become a standard of care anywhere in the world for children born with bladder exstrophy. This is the message Pamela Block, Association for the Bladder Exstrophy Community’s (A-BE-C’s) executive director and others on the A-BE-C team are carrying this week at the 10th International Bladder Exstrophy Repair Workshop in Ahmedabad, India. Experts treating bladder exstrophy from around the world are providing life-changing surgeries and other care to approximately 110 children during the eight day event that began on January 20th, 2018.

Network of donors helps Association for Bladder Exstrophy Community provide critical support

A-BE-C plays a central role at the workshop, supporting families through what can be a daunting ordeal. Representatives from A-BE-C  are on-hand providing new pajamas and supplies to children and families, leading fun activities, answering questions, educating parents on after care and helping children process what they are experiencing.

“Bladder exstrophy, while initially devastating, is treatable and manageable with proper surgery and care,” said Pamela Block. “In many parts of the world, children born with this condition are not treated or even properly diagnosed. This annual event is changing the prognosis for hundreds of children worldwide.”

All of this is possible thanks to the generous network of A-BE-C supporters, who gathered supplies, sponsored patients and doctors, and donated funds to help families pay for travel and after-care medical expenses. Pajamas, blankets, educational catheter dolls, and surgical materials are just some of the supplies contributed by A-BE-C donors.

Education and emotional care helps children cope with a painful surgery 

Dr. Pramod Reddy, Director of the Division of Pediatric Urology at Cincinnati Children’s Hospital and one of the workshop’s participating surgeons, points out the importance of this level of support.

“These are children we are taking care of, and they are in a hospital after a rather prolonged surgical intervention that is without question painful,” says Dr. Reddy. “How do we make these children understand that we are here to take care of them, and not just to cause pain? That’s where A-BE-C comes in…They bring a new dimension to the care we provide here.”

You can help.

Your continued contributions help hundreds of children receive life-changing support and medical intervention.

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A special thanks to the following donors who helped make our work at this year’s workshop possible:

  • A Stitch Just in Time
  • Lily Block and Shorecrest Prepatory School
  • Friends of Solomon
  • Anoushka Herrala and the Linus Project
  • Hollister Family
  • Jeff and Karen Jones
  • Jim Parkman and the SKB Foundation
  • Shadow Buddies Foundation
  • St. Thomas Episcopal Church of St. Petersburg, Florida