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Blanche - 07 Mar 2005 20:37 GMT

Hello. I'm writing a novel. My heroine, who is 50-something, has lupus
and has had it most of her life. Diagnosed at, I want to say, about 12?
She has an intensely serious case.

I want to do this respectfully and right. I'm doing my homework. I have
checked out of the library: Lupus Q and A by Robert G. Lahita and Robert H.
Phillips; Living With It, by Suzy Szasz; The Lupus Book, by Daniel J.
Wallace; Lupus, Everything You Need to Know, again by Lahita and Robert
Phillips.

These books, and I've only just perused them, focus on the more cheerful,
hopeful, upbeat aspects of the disease. My heroine is going to be an
example of the deadliest aspects of it. Can anybody here point me to
something I could/should read online that will familiarize me with the dark
side of this disease?

I salute all who are dealing with it, and hope there's nothing inherent in
this post to hurt or offend.

Thanks,

Blanche Davis

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Beverley - 15 Mar 2005 04:59 GMT

Well, the dark side is it can kill a person if the body attacks the right
organ and it is not realized quickly enough. If you want to know more about
the disease then you might try reading the FAQ's floating around here. Try
Andy's http://www.northeastlupus.org.uk

Also the odds of being diagnosed at age 12 is most unusual - not impossible
but not normal. And if you go back that many years ago the chances of
someone being diagnosed at that age in the 1960's is very slim indeed.

Also this disease has a 1,000 faces. We don't all have the same problems or
at the same time. So if you look over the FAQ's have still have some
questions we can probably help.

Also you might try reading Knocked off my Knees by Grace Casselman. She's
one of our own out here and it is her story.
Bev

> Hello. I'm writing a novel. My heroine, who is 50-something, has lupus
> and has had it most of her life. Diagnosed at, I want to say, about 12?
[quoted text clipped - 18 lines]
>
> Blanche Davis

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herbwormwood - 15 Mar 2005 13:23 GMT

> Well, the dark side is it can kill a person if the body attacks the right
> organ and it is not realized quickly enough. If you want to know more about
[quoted text clipped - 30 lines]
> dark
>> side of this disease?

Do google search for lupus and organ failure, you will get a few decent
links.
Bev is right that it is unusual to be diagnosed at age 12. If your character
is 50 and was diagnosed at age 12 she was a very lucky lady. That would put
her diagnosis at a time when lupus was not very well recognised and usually
thought of as fatal due to lack of proper care.
I was actually diagnosed at age 12, strange coincidence, but I was at death's
door at the time and I had been through 2 hospitals and a long list of mis
diagnoses, the fact they found it was hardly surprising as I had all the
symptoms in the book, this was 1979. And I stress it was a clever nurse who
spotted it, all the doctors missed it. I had liver, kidney, heart, lung,
spleen, joint, disease as well as the rash. I wish I knew the nurses name
but I was mostly semi conscious at the time. If anyone reading this is a
nurse who worked at Scarborough Hospital in the late 1970's and you remember
a very sick little girl who got sent off to St. James in Leeds, that might be
you, so thank you. If anyone thinks they might know her, send her to this
group please!

I have also got Antiphospholipid syndrome which is a lupus add-on. I later
developed CNS lupus which caused MS like symptoms..
Can I ask why you decided to have your character have lupus? Do you have
personal experience of it?
Feel free to post back.

>> I salute all who are dealing with it, and hope there's nothing inherent in
>> this post to hurt or offend.
>>
>> Thanks,
>>
>> Blanche Davis

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