Jessica Gleeson
When Jessica was three, her parents noticed she was losing weight, had dark circles around her eyes, no appetite and was generally unwell.
Jessica developed a flu-like infection when she was four years old. At the same time her urine turned brown, like coca cola in appearance. The urine was tested by Jessica’s GP who said it contained blood and protein - probably due to a urine infection .
Jessica’s condition did not improve, so she was referred to a paediatrician at Hull Royal Infirmary. The paediatrician admitted Jessica to the children’s ward and a series of blood tests and scans followed. These tests confirmed an acute nephritis (inflammation of the kidneys). After leaving hospital, Jessica was seen regularly at clinic and her blood test results indicated a longer term problem with her kidneys.
Jessica was invited for a kidney biopsy at St James Hospital in Leeds. The biopsy confirmed that Jessica at just five years old had a condition known as Type 2 Mesangio Capillary Glomerular Nephritis or MCGN2 for short. This condition is also known as Dense Deposit Disease.
At the time Jessica’s parents were told that there was very little treatment or research into MCGN2 and worse, that the outlook was not good. The treatment options were minimal because the condition is so rare. The doctors offered Jessica steroids, but her parents refused as they were concerned about the side effects.
Jessica said: ‘After being diagnosed, I went to school as normal, but had spells of fatigue, whereby I could not attend school for several weeks. It was at one point considered that I would only attend school part time, but I did not want this to happen. My attendance at school was often under ninety percent, which meant that I missed out on a lot of education. Whilst younger, I often felt different to other people, but due to ongoing support from friends and family I have now come to terms with my illness and am happy to talk about it. I also have felt/feel that as there is very little research into my condition. I can not really be given any information or answers to questions which I have and this frustrated me as there is so much uncertainty surrounding what may happen to me.’
Jessica is now 16 and has had few problems and leads a relatively normal life, although she does suffer from fatigue. Jessica stills attends clinic where her kidney health is monitored regularly.
Jessica would very much like to be in touch with others who suffer from the same condition. So far she hasn’t come across anyone, but this may change soon!
