Pamphlet design for the newly diagnosed - what should be in there

[marta]

As Hammy suggested we can design a pamphlet for the newly diagnosed Wegener's patients. I am very happy to put something together but I need your input and expertise. First and foremost I think we need to decide what the objective of the piece is going to be. How long do we want it to be? I think we should keep it less than a couple of pages (I'll design it so that it's not too busy looking with lots of copy so that it's not intimidating and people will digest the info better.) And the most important part - content. I'm just shooting off the hip as I haven't thought this one through, but here's where my head is at (I'm sure I'll miss some important stuff)
1:hug2:. So you've finaly been diagnosed (acknowledge that it's probably been a long hard road up until this moment)
2. What is Wegener's and why is this diagnosis a 'good thing' - relatively speaking.
3. What can you expect with the treatment - short term, long term.
4. What is the 'new normal'
5. Tips for taking your long term care under your own control (getting and understanding your lab work)
6. Your doctor and you
7. What danger signs should you look for - flares, infections, etc.
8. Support resources

OK, so this is going to take up some space even with my skimpy ideas, and like I said, I'm sure I've missed something important. Let's just brainstorm and play it by ear and see how big it gets. Let's start generating content fellow Weggies.

[pwc51]

Great idea. I posted a link to an existing leaflet on another trail. I believe it will be hard to make it so short - there is a lot of information to convey and, from my experience, we are hungry for as much information as practical as early as possible. (it is not as if we are trying to sell something with short snappy slogans - nobody should be trying to buy what we have (pred or no pred!!))

[gwenllian111]

When I pick up those type of leaflets, the question i most wanted answered (esp. when newly diagnosed) was simply, 'am i going to die?' . Obviously, with treatment, it's unlikely, but for me, it was a question that ran around my head more than any other.

[pberggren1]

Marta,

You should check out the current pamphlets that the VF sends out as well as the Canadian VF.

[Hammy8241]

Marta,

You should check out the current pamphlets that the VF sends out as well as the Canadian VF.

Here is my take on it.
Rather than produce something which is already available we should make use of their hard work and make our efforts an add on. So may I suggest the following:

1. we all have a search of the web to see what WG information sheet downloads are available.
2. Start up a new thread (so to be found easily) and post their links.
3. Ask those with medical experience to scan them and ask their opinion which one they are most comfortable with to use as a recommend for this site.
4. Ask Andrew to sticky the choice for now whilst we focus on our offering.


Now to what we can offer.

My thinking goes back to those first days after diagnosis, when you knew you were ill but not necessarily how ill, what the future held, how to pronounce the name, what drug does what, where can i get info, IM on chemo for *** sake. why am i so tired etc etc.

I did not understand that whilst I was on a chemo drug, that did not necessarily mean I would lose my hair, that the dose is very much smaller than those given to cancer sufferers ............ The need to balance your days to enable you not only to enjoy today but tomorrow and the next day too. And so on. Tips and snippets of information on what it is like to be a weggie. The use of the nelli pot/rinse – make your own? Much can be picked up through the topics / threads already here. I would like the finished item to be available through our consultants /Drs as well as a download.

Our members are worldwide so to have anything published other than as a PDF or download would appear to me to be potentially expensive. IMO we could individually print off a few copies of both the linked info sheet and ours and take them to our consultants for distribution as required. But this alone could also work out expensive for the individual. So I'd suggest that we also design as a downloadable template, a business card with the website and the links to the downloads on. This, being smaller would be cheaper to print off and give us volume

Thought?

[Jack]

I agree with all you say Hammy. What if the Forum had a Home page with an introduction to Wegener's and the links could then go there. This would be the opener for anyone searching on Google or whatever.

[Hammy8241]

I agree with all you say Hammy. What if the Forum had a Home page with an introduction to Wegener's and the links could then go there. This would be the opener for anyone searching on Google or whatever.

Sounds like a good idea Jack.

As a postnote I have just got back from hospital Rhumy dept learning to stab ones self with needles. I was talking to them regarding the lack of information for patients with WG. They said that they had some and off they trotted to get me a copy. Needless to say they returned empty handed. There is a need.

[JanW]

I agree with Hammy. Other thing is that you want the information to be easily changable, as medical research advances and treatments change.