In November 2013 I was diagnosed with aHUS, (atypical Heamolytic Uraemic Syndrome) a disease I had never heard of. I was in my final year of study of Radiotherapy and Oncology at Cardiff University and had always been a healthy young person. 

What started as a simple water infection rapidly deteriorated into a battle for life. Over the course of a week, it was discovered that I had the ultra rare genetic condition that effects only 200 people in the UK. My Grandad and other members of my family had suffered with aHUS over the past 50 years. Sadly the disease led them to a poor quality of life and ultimately kidney failure, dialysis and death. Until my diagnosis I knew nothing about it but the prognosis didn't look good! 

Thankfully that's not the end of my story! The research done over the past 20 years by Kidney Research UK has led to a greater understanding of what is happening in the patient and a miracle drug has been developed. Once I received this drug, Eculizumab, my kidney function slowly returned to normal, and I left hospital within two days! I was able to continue my degree, graduate and start work for the NHS in North Wales. I now lead a normal healthy life only needing to have fortnightly infusions of the drug - no plasma exchange, no dialysis, no need for a transplant and the same quality of life I enjoyed before.

Although my treatment is now available on the NHS there are still many unanswered questions about my condition. Therefore KRUK and aHUSUK have started a fundraising and  awareness campaign called "Answers for aHUS."  My 50 mile walk is the first part of this campaign starting on 28th February, National Rare Disease Day.

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