StoriesDec 2, 2019

Preparing for my Future: Shoshana’s Story

“My name is Shoshana and I have Spina Bifida. This is not the way I normally introduce myself to people due to limitations and labels put on me and anyone else that lives with Spina Bifida. Other kids my age are surprised to find out I have a chronic illness because even though I wear a brace, my Spina Bifida is sometimes invisible. I am often told how mature and grown-up I am for a 14-year-old. The only reason that I’ve grown up so much is because I have been a part of major medical conversations since I was born. 

I can’t lie, some days are hard. I have chronic pain and I put on a “mask” when the pain is too much and I hide behind it. But I have friends, family, and my other support systems. 

I am very concerned about what happens when I turn 18. I always think about my doctors now, and they are informed of my condition and can efficiently help me in times of need. Once I turn 18 years old their care of me can go away. I will continue to speak up about the need for adult Spina Bifida clinics for people like me. 

Another concern I have, that no 14-year-old should have, is health insurance. The only way I can live an independent life requires surgery and/or medical devices. The problem is that I (and literally anyone else who has Spina Bifida) have a pre-existing condition. The protection of quality health insurance for pre-existing conditions is important. 

I have a lot of dreams and I am working hard in high school to go to college and achieve my dreams. I need quality healthcare and insurance to live independently.” – Shoshana Siegel, born with Spina Bifida