Biobanking

Colin - Interview 18

Male
Age at interview: 49
Age at diagnosis: 17

Brief outline: Colin was diagnosed with Hepatitis C in his early twenties. He has taken part in several medical research projects, including currently one which involves giving blood samples to be stored for research. He has also had epilepsy since he was a teenager.

Background: Colin is married with three children. Ethnic background' White British.

Audio & video

Colin was diagnosed with epilepsy aged 17, after several years of small seizures and then one major seizure. Then when he was 22 he discovered he had Hepatitis C. His GP was first alerted that something was wrong when Colin had a small surgical procedure to remove a non-malignant lump, and it would not stop bleeding afterwards. Low blood clotting can be a sign of liver problems, so the GP referred him for liver function tests. These tests showed him to be quite badly jaundiced. 

 
At this time Hepatatis was still relatively poorly understood. Colin was at first told he had drug-induced non-A, non-B hepatitis, and it was assumed that it was an anti-convulsant drug he took for his epilepsy which had caused it. The neurology team changed his medication, which seemed to help take the pressure of his liver, but once he was referred to the liver team they pursued a different route and Hepatitis C was identified. He was included in an early trial of alpha interferon, which initially seemed to have cleared the virus, but as the sensitivity of the tests improved it was found to be still present.
 
Regular monitoring continued, and Colin went on another trial a few years later, a double-blind trial of different dosage combinations of interferon and ribavirin. He found this regime awful – his red blood cell count fell dramatically, and he felt extremely unwell, so after about three months (half-way through) he had to withdraw from the trial. He was able to continue on interferon and a lower dose of ribavirin, and it did seem to improve his condition significantly. He did not notice any depression as a side effect of ribavirin, possibly because he takes carbamazepine for epilepsy which is also used to help control mood swings in people with bipolar disorder. He is currently not taking any medication for Hepatitis C, but if his score goes back up he has agreed with his consultant he will take a course of pegylated interferon and ribavirin. He will also be a candidate for trials of any new antiviral treatments.
 
Most recently, Colin has agreed to take part in a biobanking research project. This has involved very little from his point of view, mainly giving blood samples to be stored for future research and answering some lifestyle and medical history questions. Colin’s view is that medical research in this country is subject to very strict regulation and therefore he can trust that his samples will be well looked after and his confidentiality protected. However, he feels it has been an advantage to him that he has done his own research in the past, though not in medicine, and that he knows how to find and assess academic information. Over the years he has developed a good and equal relationship with his consultants, in which he feels able to get all the information he needs. For other people, he imagines some of the leaflets and forms they are given must be very daunting. However, where research participation involves little risk to the individual he would encourage people to take part.
 

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