Meet SOFIA Patient Nicole

21 year old Nicole, flew all the way from Connecticut, USA to take part in the SOFIA Observational study last month. Here she tells us all about her reasons for taking part and her experiences coming to the Royal Liverpool University Hospital to take part in SOFIA

When I was first asked to participate in the SOFIA study I was nervous. I was given information about what was going to be done, but I also looked it up on the AKU Society webpage. My mother was nervous about the ear biopsy, I was nervous about a multitude of things. What if they found something bad? What if something went wrong? Was I up for my first medical trial? I had thought about it for a while and decided I was going to do it. It was doing something, I couldn’t just sit at home and pretend I was doing my best to come to terms with my AKU.

So I went. The day we left everything was going smoothly we arrived early only to find out our plane was leaving earlier than expected, by an hour. We had just enough time to make it through the airport to the gate where they had already started boarding. We settled in for the flight and took our uneventful 7 hour trip to Manchester, UK. We were picked up at Manchester airport and brought to our hotel (The Nadler) which was a very comfy modern hotel. 

Then the next day I began the trial. The taxi was there to pick me up in the morning and took a quick drive to The Royal Liverpool Hospital where a nurse met me to bring me upstairs. Everyone was extraordinarily nice and Dr. Ranganath was informative and helpful. The AKU Society even sent Ciarán to help oversee my procedures as well. He also was very friendly and made the whole process less intimidating. I think the worst part was the ear biopsy. The nerves beforehand can really get to you. I have never been under any kind of medical procedure before and I didn’t know what to expect. That uncertainty is what made it the worst part. Also my fear of needles contributed to my uneasiness as well. After the biopsy I had absolutely no problems, no pain, a little bit of a bruise and some soreness but nothing that stopped me from doing anything from my last two days in Liverpool. In all the trip was pleasant and I hope that my contribution helps with the data they need. In addition I brought back some great souvenirs from England! 

If you would like to take part in SOFIA and are not currently enrolled in SONIA 2 or taking nitisinone please contact Ciarán at the AKU Society by emailing. 



Welcome To DevelopAKUre

DevelopAKUre is a series of major international clinical trials, run by a consortium of 12 European partners. It aims to study a potential new drug, called nitisinone, and assess its potential effectiveness in treating the rare disease, alkaptonuria (AKU).

DevelopAKUre is co-funded by a grant from the European Commission. This website is run by a UK patient group, the AKU Society. Learn more about AKU on the AKU Society's What is AKU page.


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