In this week’s blog, we speak to AKU patient Antony Kelly. Antony has been kind enough to tell us about his experience with AKU, sharing his patient story with us he talks us through his initial diagnosis to how AKU affects him today.
I was first diagnosed with AKU at only a few days old in 1976. I was born in a maternity hospital where doctors noticed my nappies were a funny colour. I was taken to the Special Care Baby Unit
SCBU and my parents were told that I had something called alkaptonuria, something that wouldn’t bother me or interfere with my life growing up until I was older probably in my thirties or so.
Growing up I was fine always knowing I had AKU. At age 20 I went to work in a care home. I spent the next seven years working in care homes, home care and hospitals, I noticed that I had a bad back & shoulder but put this down to the lack of training I received in my jobs and thought nothing off this trouble. I had physio on my back and shoulder and it kind of worked. Eventually in 2007 I decided after a move down south to leave health care and worked in an office in the NHS sitting at a computer reading and walking around the hospitals.
In 2009 me and my partner left the south to live in the North East. I got an office job at a local hospital, it involved sitting reading and walking around.
My partner and I would think nothing of walking to town and back, this was maybe 2-3 miles and did not cause me any problems. I could also move furniture around at home. In 2010 I bought a bike as part of an NHS scheme, I and my partner would use them to go on bike rides.
I used to cycle to and from work which was around five miles. One day after work I went to collect my bike and it had been stolen, so I had to start taking the bus. Over the course of time my back was getting stiffer and stiffer, eventually in 2011 at 35 I was diagnosed with osteoarthritis in my low spine, both hips and knees.
We moved from the north east back to Yorkshire in 2012; I had to pack in work and go on benefits, I was in a wheelchair for distances, and my partner became my carer/partner. I struggle with pain and it’s certainly been a journey over the past five years, medication starting, medication changing, the mornings are worse with the stiffness and the pain is pretty constant due to the osteoarthritis.
In 2015 I and my partner split up after 11 years, not solely because of my disability but also time and other issues. After being on my own I had to learn to do things for myself again. I had a two bedroom council flat I had to move out of so I wasn’t paying the bedroom tax. After a while I moved back to my hometown to be closer to my family.
I am now on my own for the first time since AKU became my disability. Accepting my disability is hard mentally and physically. I had the contact details of Lesley from the AKU Society but kept putting it off, eventually I accepted the invitation to go to the NAC in Liverpool and this year will be my fourth visit. The first year I went to Liverpool I was told you’ll be here, there, on and off beds, seeing person after person, but I got to meet other people with AKU which was good as it made me feel I am not alone in this.
This year I had to apply for the Personal Independence Payment which worried me. I contacted the Citizens Advice Bureau who sent someone to my home to help fill the forms in for me. I had my assessment and was awarded the higher rate. Life has changed, but I no longer see AKU as my disability but as a friend of sorts, I now go on holiday on my own but with help from the airport, I see shows on my own sometimes, I also go out weekly, I don’t really use a wheelchair unless I have to, I try and use mobility scooters instead to try and stay as independent as possible. What is nice is that having AKU has extended my family.
We would like to say a big thank you to Antony for taking the time to tell us about his experience with AKU. This blog is a part of a new ‘Meet the Patient’ series we will be working on. If you are an AKU patient and would like to share your story with us, then please contact Ciarán at