June this year is a very special month at the National AKU Centre (NAC) as AKU patients Sharon and Maureen will be attending for their 5th visit.

The NAC opened its doors 5 years ago and welcomed Sharon and Maureen as their very first  patients. To mark this very special anniversary, Sharon shares her experiences over  years, how the NAC has changed and her hopes for the future.

How has your experience of the NAC been over the past 4 years?

My experience at the NAC every year over the past four years has been such a positive one. I have been amazed at the organisational aspect of having to arrange so many appointments in a busy hospital setting and in a short space of time! It works so well, and without too many hiccups. The consultants I have seen over the years seem genuinely interested in my health and well-being. They are all easy to talk with and good at explaining things.

It has also given me a chance to meet and chat with other AKU patients over a period of several days and in informal settings. We are able to get together in the evenings to just talk about anything.

It is exhausting being poked, prodded, scanned, questioned, over a period of 3-4 days, but it’s well worth it. It’s Quite a thorough check-up.

How has the NAC changed over time?

Over the years, it has changed a bit. I really appreciate not staying in hospital and having a quiet room of all my own (or with my husband) to retreat to at the end of the day. I think our comments were listened to after being Guinea pigs the first year. We no longer have the intense IQ test at the end of our stay, for one! I was past it the first year and just wanted to sleep, not answer complex maths questions!

Have you noticed any health benefits since attending the NAC?

As far as health benefits, being on nitisinone has meant that I am no longer producing the harmful acid in my body, so my body is ageing at a more normal pace. Joints won’t get better but at least their deterioration is at a normal rate. I have appreciated having access to the pain clinic and Dr Jones’ injections helped my discomfort. I really appreciated the fact that last year we were given a recap on most of our results before we left the centre by Prof. Ranga. He explained all the test results and answered questions. The recap meetings with the cardiologist and dietician were also very helpful.

What do you hope for the future of the NAC?

I do hope that the NAC can continue to exist to support and keep a check on patients with AKU. This is so important since not many health professionals know much, if anything, about AKU. The centre gives vital information that supports further research into AKU, which is so important in trying to find treatments and maybe even a cure for this disease.

Thank you for sharing your experiences with us Sharon – hearing how the NAC has supported and benefitted our patients really shows how far we have come over the past 4 years! Next week, Patient Support Manager, Lesley will discuss her experience of working at the NAC since it opened in 2012.