Realizamos uma reunião especial para discutir casos com o staff e fellows e apresentamos temas livres que iremos apresentar na ESPU em Napoli. We have done our regular staff meeting discussing cases and showing the papers to be presented at ESPU in Naples

My name is Eva, I am a Samoan/Maori 17 year old with a condition called Cloacal Exstrophy. I was diagnosed with Sensitization Syndrome in 2017 when I presented with pain initially in my right thigh then it progressed to my left groin. They suggested a tough love regime where my parents, teachers and health care providers made me move and exercise despite how much pain I presented . For 4 years I was tortured until my Dad couldn't take it anymore and in desperation contacted the hospital who got angry and dropped us from the pain team. We requested the hospital records and was shocked to see that they had attributed a behavioral component to my symptom's. They have me listed as a Bladder Exstrophy and said the pain is because of my medical history however I only had the one surgery after birth and never suffered pain before. As it turns out I have all the symptoms of a tethered cord. 100% of Cloacal Exstrophies have occult spinal dysraphism. However when I finally got to see the hospital neurosurgeon for the first time in my life last year he told Dad that that not true. The hospital has destroyed my life and my family. And we continue to get denied care at Starship hospital who have become increasingly hostile. The lawyer contacted me today and said I am dropped from childrens and have to go to adult My weight is down to 2-5% of average. I'm the only Cloacal Exstrophy in the world where no attempt has been made to make me continent. Or fix a widening pubic synapsis. And a tethered cord. I'm the only Cloacal Exstrophy in New Zealand. And I just found out that 90% of my large bowel is gone. My original Pediatric surgeon hasn't bothered passing that on to anyone. And the hospital doesn't believe me even though I showed them the original surgery notes. I just got turned down for colorectal input. I've been on an adult waiting list for bladder surgery for 7 years as they said that its an elective surgery. And I've had no orthopedic, urology or colorectal input as a Cloacal exstrophy. Its a miserable existence and hugely stressful for my whanau. The pain deep into my groin is constant now and debilitating. Both my feet are numb. And my bladder has disappeared on the MRI. My body is bent and they said that one of my legs is shorter than the other. I never had that before I was 10. If anyone knows where I can get my cord untethered then please give me a cost and Dad said he would ask his Iwi (tribe Tainui) and Mom can get the Samoan church to help raise the money. Plus our Island community where I live (Waiheke Island). Once we have the Cloacal Exstrophy international community telling the doctors here in New Zealand about this condition than I can raise the money very quickly I think. Dads number is 64 027 225 1459

Excelente debate.