According to Duncan, exhibiting at this year’s RCN Congress was an uplifting experience. A significant number of people - from the latest batch of student nurses to the most mature matrons - were interested in AKU and in our charity. We were the only exhibitors raising awareness of a rare disease. Though some delegates knew of AKU from direct contact with a patient and others had seen the stand at previous congresses, for most it was their first encounter with the disease. ‘If you can pronounce ‘alkaptonuria’, you get a chocolate’ was Duncan’s usual ice breaker - any pronunciation was acceptable. We expect that they will be better informed in the future!
“I struggle with standing up for any length of time, so I had to take many breaks. Was it worthwhile, though? Yes. Would I do it again if asked? Yes.”Cindy, Duncan’s wife and main carer, was there to support Duncan and Lesley. She found the experience rewarding and inspiring. Because of her background in community nursing, she could have in-depth conversations with delegates about how to manage care for AKU patients. Her personal and professional insights, she told us, enhanced nurses’ understanding of AKU. In particular, she was encouraged by the interest which student nurses showed. They seemed to understand our patients’ wide-ranging care needs. Patients with complex degenerative diseases such as AKU need a holistic care approach – the body is affected in many different ways, and care should reflect this.
“I’m grateful that Lesley and the AKU Society allowed me to attend an RCN Congress exhibition. I never had this opportunity when I was nursing. It was a very interesting and encouraging experience. I was able to update my knowledge of nursing and find out how the profession has advanced in the 21st century. I also learned how to become a better carer. This could help me in my role as Duncan's carer and improve his daily life.”
The newly published results of a study held at the National Alkaptonuria Centre (http://www... ...more
We’re really excited about our third Stand Up for AKU Comedy Night on 3rd October. Thi.. ...more
New research has proven for the first time that a drug called nitisinone treats AKU in peopl.. ...more
We have some exciting news. The AKU Society has just been awarded a £60,000 grant .. ...more