Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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sandyclause 05/30/2009

I was just diagnosed with lupus, on top of having fibromyalgia. While I know a little about it, I am going to the book store today to find a book. I was wondering if anyone knows of a good book about lupus.

Thanks!

deleted_user 05/30/2009

The Lupus Book: A Guide for patient\'s and their families by Daniel Wallace is probably the best book to buy.

deleted_user 05/31/2009

And don\'t buy any book that\'s more than 10 years old or you\'ll see scary OUTDATED information!!

Or checkout the lupus organizations; they have huge amounts of information in small bites so it doesn\'t overwhelm you. BTW, most lupus patients have fibro too; so we ALL understand. Feel free to ask us any questions you may have. There are many of us in this group who have had this disease for a long, long time. (I\'ve had it 22 years. I went to the store and the book I found said the survival rate was 5 years. So scary and so wrong! That was back in the old days when only the SICKEST SLE patients were diagnosed. So the statistics were VERY skewed.)

It\'s possible to live a relatively normal like with this, honest.

Tracy

earthwalker 05/31/2009

I have a copy of "Talking about Lupus : What to Do and How to Cope" by Triona Holden and Dr Graham Hughes (Consultant) pub. date 2004 and supported by Lupus UK and St. Thomas\' Lupus Trust. It was given to me by a friend, the year I was diagnosed. It is an excellent resource and written in an easy to digest style.

Often Lupus organisations have libraries, so if you decide to become a member you can borrow books.

I agree with Tracy about getting up to date info. either from books or from doctors.....When I was first diagnosed, in 2005 (though apparently they think I have had Lupus all my life), there were still some doctors out there that gave a 10 year survival rate. Which as we can all prove, by our very existence is untrue.

There is life with Lupus, you just have to tweak a few things, to get round the little obstacles our friend Lupus puts in the way. So worry not, and please, allow us to help if we can.

sandyclause 05/31/2009

Thank you everyone. I went to the bookstore and they had a total of 1 book, though it was more about the person who wrote the book. I had to go online to find anything, and ordered the book you recommended Yolanda. I will look for the one you mentioned, earthwalker. I was going to check out some of the lupus organizations on the net, but haven\'t got there yet. I appreciate the support: when I told my boyfriend, who has been incredibly supportive with the fibro, his first response was, "oh, honey, people die from that!" So I look forward to educating him about this too.

Thanks everyone!

earthwalker 05/31/2009

People die from a lot of things....I always joke with my family that "life is terminal".....At least he\'s heard of Lupus, many people haven\'t. The worst are the ones who think they can "catch" it.....Anyway, I am glad your partner is so supportive, this will help you get through the rough patches.

love, light and peace to all.

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