Hi everyone. I realise I may be going over old ground, but haven't managed to find anything suitable by searching the site or the web. I was diagnosed with CML 3 years ago (I have the T315i mutation, but Ponatinib has kept me in MMR for a year so far - which is great). Unfortunately, despite my best attempts to paint a positive picture, my eleven year old son has become very anxious about my condition, and so I have been trying to find any suitable resources: videos, articles, etc, that might help him understand CML, TKIs and bcr/abl monitoring a little better and hopefully re-assure him. Any suggestions would be much appreciated - thanks!
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Educational resources for children
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Hi Mark,
That's a great question. I am not sure there are many child-friendly materials around. Most of the material is geared towards adults, as they're the main patient group. The stuff that takes kids into account is more about paediatric treatment rather than explaining CML at a level a child will understand.
I don't think these are ideal, but perhaps better than nothing?
- This one is easy to follow, and though it doesn't explain much about CML itself it deals with patient journeys. In this video, the patient is me! There are a few more in this series here.
- This video is aimed at explaining CML to kids, but having watched it, I don't think it is massively child-friendly!
- This video is probably a bit simple, aimed at really small kids - but it might give you a few ideas how to explain leukaemia to your little boy
David.
Hi,
This is an interesting issue and I will attempt to highlight this as an unmet need at a meeting I will attend on Monday with CML clinicians- including one clinician who treats children with CML. I will let you know if there are any helpful publications that are out there already.
Sandy