Clinical trials & medical research

Sophie - Interview 06

Age at interview: 23

Brief outline: Sophie was invited to take part in a clinical trial by her doctor. The trial was to assess glycemic control in cystic fibrosis. It was a short trial that involved monitoring her blood sugar levels. Sophie is very supportive of clinical trials in general.

Background: Sophie is 23 years of age, lives with her parents and describes herself as White British. Sophie was diagnosed with cystic fibrosis at the age of eight years. Sophie works full time in Education. She is also ambassador for the Cystic Fibrosis Trust.

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Sophie is 23 years of age and lives with her parents. Sophie was diagnosed with cystic fibrosis at the age of eight years. This is a late diagnosis for someone with cystic fibrosis. Sophie works full time as an Academic Mentor helping students achieve their full potential and is an ambassador for the Cystic Fibrosis Trust. In addition to this, Sophie is a member of the Youth Advisory Panel for the Youthhealthtalk website and part of the Advisory Panel for the ‘Young people and clinical trials’ project. She has been living her dreams travelling around Australia, New Zealand, Malaysia and Indonesia.

Sophie recently took part in a trial to assess glycemic control in cystic fibrosis. This involved a Continual Glucose Monitoring System (CGMS) which is a small monitor attached to a very fine sensor that sits under the skin of the lower abdomen to monitor blood sugar levels. Sophie received lots of information about the study and was able to ask questions if needed. Her doctor also made sure that she understood all the procedures involved. The monitor was attached to Sophie for 4 days. Sophie also had to do four finger prick blood sugar checks a day and keep a record sheet of the blood sugar levels and of everything she ate over the 4 days. Sophie found it interesting to take part in this trial; ‘My doctor has emailed me to say that my blood sugar levels are normal so this is good to know!’ Although Sophie has an intense and time consuming health regime to follow including her physiotherapy and medication, Sophie managed to fit this extra activity into her day. She says she had to be 'very' organised’.

Sophie hopes that taking part in research will help develop new things for the future for people with cystic fibrosis. Her only regret is that this is the first clinical trial that Sophie has taken part in since being diagnosed at the age of eight years. Sophie is supportive of clinical trials for the benefit of others in the future that may be diagnosed with cystic fibrosis. She recognises that taking part in a clinical trial can be a big commitment depending on the type of trial, the treatment and if there is a control or placebo group. However, Sophie also recognises that being in the placebo group is still very important. She says that in order for things to develop and for progression to be made, this can only be done through clinical trials and research. She talks about the change in her own health regime and how much this has improved over the years since she was first diagnosed; all as a result of research. However, Sophie feels that there is a wealth of information missing about clinical trials for younger people and would like this to be more accessible to young people themselves. She also feels that the results of clinical trials should be more widely available to young people whom might benefit and be informative to the general public.

Read Sophie's guest blog to find out what she's doing now.


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