I am a 32 year old female with caudal regression syndrome/sacral agenesis. I would like to learn more about my condition and how it affects my body as I haven t seen a doctor about it as an adult. I have to self-catheterize, but have no idea how much of my sacrum is missing. How can I find a doctor in my region that specializes in seeing patients affected by this? So far, I haven t found a doctor that is very familiar with CRS/SA.

Summarized question: What are the signs and symptoms of caudal regression syndrome?