A patient reports

Read patient reports and learn how to make a report.

When filling out a report of an adverse effect, use your own words and be as precise as possible. With an online form, there is usually a field (a text box) where you can write, using your own terms, what is happening to you. On a printed form, if you do not have enough space, you can add a page where you can add more text. Sometimes you can consider taking photos if you have a visible reaction (on your skin, for example).

inflated bellyIn the illustration, you can see a photo from 1997 taken of a relatively young patient who has a chronic disease and who has been treated for more than two years. His belly started to swell after two years, and as he thought he was too young to have a pot belly, he decided to report it as a suspected reaction to his treatment.

This is the exact wording he used:

“My belly is slightly enlarged, but it's solid. In fact, you can see the muscle lines across my stomach (if I stand in a really good light), so it doesn't feel like fat. It's hard. The other strange thing is that my belly button went from an "inny" to an "outy”.” We have been assuming a hernia”.

The description is simple, and describes well what you can see in the picture. This is very helpful, because other patients can read this description (for example when  discussed on a social media site or forum) and possibly recognise what they are experiencing themselves.

This is exactly what happened: other patients described the same thing, and this patient added:

“Yesterday someone from my online group said something about their belly button doing the exact same thing. Could be a coincidence, but if anyone reading this has had a similar reaction, I'd like to hear about it”.

And in fact a large number of patients realised were reporting the same thing. They asked their clinicians who could not really comment or advise as they did not know if this was due to the treatment or not. They asked the pharmacovigilance experts. The scientific term for this side effect is “lipodystrophy” or “fat redistribution”. These terms do not come immediately to the mind of patients, but pharmacovigilance experts can translate the side effect as described by the patients into the precise scientific terms they use.

Page created: 08/11/2012
Page last updated: 07/11/2014
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