Rachel Althizer is traveling with A-BE-C for the 2023 International Exstrophy Workshop in Ahmedabad, India, as a social worker to assist children and families with exstrophy as they prepare for surgery. Above, Rachel prepares for her trip by packing hospital matching cards for exposure therapy and therapeutic play.

Rachel’s Story

I am 30 years old and was born with classic bladder exstrophy. My exstrophy journey started with an immediate closure, re-closure, bladder neck reconstruction and blockages in my ureters. I became a patient at Hopkins at age 4 when I immediately had surgery for a neobladder created with my intestines and mitrofanoff using my appendix.

My stoma is located where my belly button should be and I was told to catheterize every 4 hours. I then became the youngest patient of Gearhart’s at the time to catheterize myself in October 1996. Since then, I have been healthy and happy, only having a few minor surgeries in middle school, high school and adulthood.

I have attended the John’s Hopkins bladder exstrophy picnics and always looked forward to them. Community and connecting with fellow bladder exstrophy patients and families has brought me and my family so much support over the years.

I currently live in eastern North Carolina with my husband and have a bachelor’s degree in psychology and master’s in social work. I work as Director of Human Resources within my family’s business and am beyond lucky to work with my mom and siblings every day. But my passion is for traveling and helping others.

I volunteered in Peru for two months during college, fostered 13 beautiful children during an internship and have been a foster care social worker. I have worked as a mental health therapist with children in multiple settings such as hospitals and schools. It is a passion of mine to connect with children and families and to continue to contribute to the bladder exstrophy community.

I am ready to emotionally and therapeutically support the families I will meet in India. It is amazing that the association of bladder exstrophy has been able to connect us on a global scale. I hope to be an asset to the medical team with my experience as a patient and social worker.