Draft TP53 Leaflet

[Despina]

I think its good, clear and got all the basic information but there’s nothing on there from a doctor. I think if people take it to their doctors they might not take it seriously because its not verified. Is there a way to get one of the doctors you are in contact with to put a quote on it or something? Just to show that it is backed up by people in medicine and its serious.

[Sue A]

Hi Pan,
I think the leaflet is a great idea. It’s exactly what I need for my initial meeting with our GP’s to inform them about LFS and the dangers of it to my family. Indeed, when I rang up to make an appointment, the doctor I spoke to had never heard of LFS. I have an appointment booked, but will only have 10-15 minutes to explain all about it (They would only give me a routine appt under my husbands name, not an actual meeting)….so the leaflet will be perfect, then they can go off and do their own research to clarify it. It stresses the urgency of quick referals which is what I need to get accross to my GPs. I do think that an endorsment of some sort from a doctor would be good and give added weight to the leaflet, but until then, I would be happy to use it. Is there any chance the finished product would be done by the 20th?!!! (Thats when my appt is).
Sue A

[pennysophia]

Hi all,

I’ve shown the draft to a few doctors at work ( I work in Harley Street) and they found the information really interesting. In fact none of them had heard of Li Fraumeni or TP53 before they read the leaflet, which highlights the importance of it!

[PanP]

Sue, I’ll make sure you have a copy before the 20th. And I’ll see if i can get a medic to give a seal of approval…

[PanP]

good point. I’ll see if I can sort that out.

[PanP]

thanks, Pen

[Sonja]

Hi Pan,
thanks a lot for preparing the leaflet! It is a great idea and I will definitly use it for my family and friends. I am so tired to explain it again and again and people very often forgot what I have been telling them before..I understand that this happens, but still it is a bit annoying. I think this leaflet will make it a bit easier for them, more concrete, more real. Something which is really THERE and cannot be talked away and forgotten easily.

I am wondering if from a medical point of view it is worth mentioning that the gene defect is located only on one of the DNA string. One of my first questions to the genetic counselor was: ” does this means, I do not have this tumour suppressor protein at all?” He explained, that if this were the case, I would rarely be able to live.
In most cases, damaged cells will be killed in LFS positive patients just like for everyone else, because the healthy DNA string procudes TP53. It is the so-called “second hit” which causes the problem, from what my current understanding is.
I am not sure if this would be too much detail. Just an idea.

Again many many thanks…I am looking forward to the final leaflet 🙂

Sonja

[PanP]

Thanks for the feedback, Sonja. i hope the leaflet will work in the situation you describe.

I think your point about damage to both copies of the TP53 gene is probably too detailed for the leaflet but we should add something on it to the FAQ.

Pan

[Karen]

Hi Pan

Yes I think the leaflet is clear and well explained, I agree that medical verification would be useful and maybe a point of contact eg local genetics clinic or Royal Marsden could be mentioned if they wish to obtain further information relating to the condition. I look forward to seeing the finished item.

Karen

[PanP]

The leaflet is now ready and has been published here: [url=https://www.tp53.co.uk/index.php/lfs-leaflet]https://www.tp53.co.uk/index.php/lfs-leaflet[/url]

I had been hoping to have had the text verified by now, but hopefully that’ll follow soon. I’ll do an update once that comes through.

Thanks all for your feedback. Obviously please let me know if you see any errors or have ideas of how we can improve on it. And, most important, please let everybody here know whether it works in practice (or not!)

[Author]

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