The story of Natalie

When I was 3 years old, my teacher at school noticed that I had issues with my hearing. My mother took me to the hearing specialist in London and there they discovered I had moderate hearing loss. I was given two hearing aids to wear and went back every so often for check ups. As I grew older and started to go to school, I would often miss a lot of school due to being unwell – my recovery time was longer than the average child. It was not until something severe happened to me at 9 years old – I developed hypertension (high blood pressure.) The doctor sent me to the hospital for blood tests – it showed my kidney function was abnormal since they found high protein in my urine and high levels of creatine in my blood. They also found that I had high levels of phosphate. After several tests, they discovered more. I have an ear pit on one ear and neck fistula. These were all symptoms of the condition that I was diagnosed with – Branchio-oto-renal syndrome. From then on, at 9 years old I was on a variety of medication and was monitored closely under the care of a renal specialist at Great Ormond Street Hospital where I visited every 3 months. I met with a dietician who gave my mum advice on how to eat a low level phosphate diet. I am now 27 years old – I am fortunate to not be on any medication and can maintain a stable kidney function (Stage 3 CKD) with a healthy lifestyle. The reason I wanted to share my story was because I have not met anyone who shares my condition and still to this day, information on BOR is not often talked about. I still do not know a lot about my condition or my future – the thought is terrifying. I have managed to find a group on Facebook – I am hoping to meet more people like me so that I do not feel alone in this!