Long term health conditions

James - Interview 21

Male
Age at interview: 16
Age at diagnosis: 11

Brief outline: James has a renal condition called Senior Loken Syndrome and it means that his kidneys didn't develop as he grew older. James was diagnosed with his condition when he was eleven years old and since then he has spent much of his time on dialysis. Four times a week he goes to hospital to have dialysis and he is able to attend school two days a week. This condition affects both his kidneys and his eyes and James is now registered blind.

Background: James lives with his mother and two brothers. He attends an ordinary school which also has a unit for partially sighted and blind students. Ethnic background/nationality' White British.

Audio & video

James is 16 years old and has a renal condition called Senior Loken Syndrome and it means that his kidneys didn't develop as he grew older. When he was about five years old the optician noted that there was something wrong with his day time vision as well as being long sighted. Over the years his eyes became less tolerant of light and the lenses in his glasses became darker. This is all part of the same syndrome which affects both his kidneys and his eyes and James is now registered blind.

At the age of eleven James got ill with what he thought was a bug and he had both vomiting and diarrhoea. No one thought much of it, but then his skin became yellow and was taken to hospital. After many tests he was eventually diagnosed with his kidney condition. James does not remember being told about his diagnosis by any consultant but he was put on dialysis straight away. 

Since diagnosis, James has spent much of his time on dialysis. He had a kidney transplant but unfortunately it failed. Four times a week he goes to his hospital to have dialysis and he is able to attend school two days a week. He attends an ordinary school which has a special unit for partially sighted and blind students. What James and his Mum would like is for him to have his dialysis treatment at home. It would means that James would be able to attend school full-time and to have more time for social life. He does not see much of his friends at the moment because of his long stays in hospital. A year ago he was promised home dialysis but nothing has happened yet.

James attended a boarding school for blind children for a few years. Initially he had a very supportive Head Teacher that made sure he was sent school work when he was away in hospital and he also had a nurse who came to school to put him on dialysis. Following a change of Head Teacher other things changed and James began to feel restricted on what he was able to do. At that time James started his dialysis in the evening, and it went on until the next morning lasting for a total of eleven hours. Other students weren't allowed to visit him in his room. Moreover, teachers were giving him a hard time for not completing some of his work. James became increasingly lonely and depressed and he thinks it was his lowest point since his diagnosis.  

James says his consultant does not like giving him bad news and he usually waits until he has something good to tell him as well. Doctors have told him that he will be in dialysis for another five to six years and that after that he would need to have another transplant.

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