Make a tell all book

[Seeker]

I am curious, has any one thought of writing a Sjogren's book, based on the information gathered from this site. 

With all the excellent advice and stories you see here, it would make a wonderful read.
It could also be a financial help to the site.  Instead of charging for the book, ask just for a small donation to receive it.

OK, it's a dumb Idea.  (Or is it?)

Seeker

[Joe S.]

Why don't you make it an Ebook?

[stephL]

I like the idea. Would this be a team effort type of thing?

[irish]

seeker, Go for it. Write the book yourself and then when you get the money you could donate to this site.

It is hard to please many people and hurt feelings usually happen even though unintentional. Everyone has different ideas of what the expected result should be. If you do it yourself it would get done faster. Just my humble opinion. Irish

[smallfry]

What a wonderful idea maybe we can take a copy to our doctors so they can have a better understanding as to what most of us have to contend with, because with a lot of doctors if it doesn't come from a textbook then it's just not so.

WHAT A GREAT PROJECT.

Cheryl 

[stephL]

Good point Irish, it can be a headache to make decisions with a group. I just read an article about this.

http://www.psychpost.org/2011/08/group-decisions-process-loss-social.html

[soycoffee]

 The major question is, Who has copyright to individual posters, the member or the Forum? Even if copyright stays with the Forum, there is a supposition that one's "work" is to be taken in the context of a particular thread, or time of year, or year, for that matter. Another context is one's particular stage of understanding and acceptance of Sjögren's. Yet another context is time of day a post is written; I do better at sticking to the subject the earlier in the day I post, and some threads where I've wandered from topic are embarassing to me.

Yes, I wish doctors would read some of this stuff, and/or family members, friends, others. We can invite them. We may have an md member or two.

Best,
Soycoffee

[Seeker]

If the book was written through a non profit organization, diffrent laws would apply.  The project would take awhile to do.  Because of all the information available.  There would also need to be some sort of disclaimer that we are not give any medical advice.  But the project could be done.  As Joe suggested it could be an E-book.  Then maybe some place like Amazon could make it available to down load on to a Kindle. 

Just some thoughts.

Seeker

[Linda196]

Seeker, I'm glad you are able to see the vast resource of people and stories this site reflects, but, in addition to Soycoffee's appropriate concerns about copywrite, we have an established rule regarding privacy that "prohibits anyone from copying anything from this forum board without permission". https://sjogrensworld.org/index.php?topic=8596.0

Since it would be impossible to obtain the written or even implied permission of every source cited in such a work, due to members having left, etc. I'm afraid the idea of such a book isn't possible.

[DryEyes]

I think it would have been a great idea but seems like it would be impossible to achieve from what Linda196 says in her post.  However  perhaps we should just give the link for this sight to the Dr's we have and implore them to read all the posts.  Perhaps the book is already being written with each of our posts ....  just a thought ...

[Scottietottie]

I have Sjogren's world 'cards' (like business cards) that I printed off from a template on this site. I hand them to doctors when I see them. In fact I hand them a few and ask them to pass them on to other Sjogren patients and also their students.

[slccom]

Actually, knowing that a book is in the offing, we could take the approach of the "Chicken soup for..." model and have people contribute essays explicitly for the book. This would get around using the previous postings, but let us share our stories.

Some of us are really hard up for money, and being paid for the contribution would be welcome. However, the logistics of handling royalties that way would be difficult. We could donate the copyright royalties to the organization.

If you go the e-book route, booklocker.com is a great place to work.

Sharon Campbell.

[lynnmarie219]

I think the way to go is to refer people to this site whether it be doctors, friends, or family for first hand information from people who really know how it is to live with Sjogrens.

I also like Scotties idea about handing out the business cards with our website information on it. I used to have some when we first posted the template...will have to print out some more. Thanks Scottie...I had actually forgotten about the cards!

If we handle it this way...no copyright laws, board rules, or confidentiality is being tampered with and everyone can feel comfortable in continuing to share here.

[Seeker]

Oh darn, that means I won't be able to put a down payment on a yacht, from the royalties.  Oh well I guess I won't be giving up my day job.

Thank you all for your input.  It was very interesting to read your opinions and ideas.

Seeker

[warmwaters]

Some thoughts on doing an ebook - I think it would be wonderful, but I'd caution anyone who thinks they are going to make much money off it. I've been working on preparing an ebook for publication on a completely unrelated topic, and have been reading about self-publishing.

The thing to realize is that the average number of copies sold for a self-published book is 257 - so even at $20 a copy, that a only whopping $5140 dollars.  Even if we did better than normal, and sold a 1000 copies, that's only $20,000.  Don't retire to the Bahamas yet!

However, if it were to be done for love, not money, it could be very useful. I see several possible approaches -

Case studies - different people tell their stories of diagnosis, current problems, treatments (better for sharing with doctors)

Topic based - Things like "The Sjoggie toolkit" -  listing how to deal with dry eyes, mouth, etc, "Questions to ask your doctor", "How to find a new doctor", "Dealing with Friends and Family", "When to tell work about your illness".  These are things that have been discussed here and have been very very helpful to me.   (for sjoggies)