What Is Lupus Disease

Miriam Said:

I need help for Lupus disease?

We Answered:

You would tell the patient the truth: that there is no cure for the disorder, but that we have medication which is very good at controlling the disorder, so that hopefully it can be kept in check. In addition, you should stress that she should take some responsibility in helping control the disorder, by avoiding sunlight, getting plenty of rest and eating healthy, exercising within limits, and taking the medication as prescribed. In addition, urge her (or him) to join the lupus foundation of america, which is an excellent source for knowledge and support.

Kevin Said:

What is lupus disease and how is it caused ?

We Answered:

A combination of hereditary genetics causes lupus- there is no real reason why people get it. It is considered a terminal illness because you cannot be cured of it. There are medications you can take to relieve the symptoms of it, but it will never go away. Lupus is an auto-immune disease that attacks every living tissue/organ in your body. It makes your body start fighting against itself. Here is a link: http://www.medicalnewstoday.com/info/lup…

Ruben Said:

Questions about Lupus Disease?

We Answered:

lupus is a systemic and devastating disease. the newest therapies can greatly reduce the symptoms, but not reverse the process that is going on (the body makes antibodies against itself). it is also genetic and more common in women. so yes and no.

Nora Said:

someone tell me honestly, how serious is Lupus disease?

We Answered:

Lupus can have varying degrees of severity and different organ involvement. Lupus can be a very serious, potentially fatal disease even with treatment.

Claude Said:

What is Lupus disease?

We Answered:

It probably sounds scary to be told you have lupus, especially at 13 years old. It can be very painful and even life-threatening but it isn't always so bad as it seems. I've had it all my life and I'm eons older than you (I was around when Moses wore papyrus diapers), plus I live a life I choose and enjoy it too so try not to let it get you down.

You're smart to ask these questions because information is the strongest power on our side, as long as it is true and up to date. A lot of mystical mumbo-jumbo and phony cures float around, some promoted by medicos or shysters so tune in the truth and flush the slush.

First, Lupus is a disease of the autoimmune system which means that, even when symptoms strike our outsides as in discoid type, or internally as in SLE (which means systemic, which means here or there inside) it is because our bodies misread internal signals.

When the healthy immune system feels threatened by a virus, or exhaustion or bacteria or other sick people, it turns out its inner army to fight the cause.

When the lupused immune system reads those signals, it turns its army on the symptoms instead of the effects, which means, against us. It's like Marvin the Martian in the old cartoons. Marvin and his army come from Mars to invade earth but they are so cock-eyed and cuckoo that they fall over their own feet, shoot themselves with their own guns and blast themselves with their own rockets. Major battle berserk. That's lupus, going on inside us. Fun, it ain't but it can often be lived with once we get the hang of it.

Tell your friends all that and be sure they get that this is serious stuff but you are still and always will be - you. Then tell them you need to avoid sunlight or at least cover up with 30+ sunscreen, big hats, long sleeves and pants/skirts, whatever. That you need to lighten up and kick back as soon as you start to feel the teeniest bit tired or spacey. That sick people need to back off and keep their germs to themselves until they're absolutely sure they're better. Catchy stuff is very unkind to us lupies, whether they feel sick or not. Don't burn the midnight oil or it's burn you out and you'll pay for it in extra time lost feeling ill. Plus pushing it pushes our pain up.

Find a good doctor who specializes in lupus and is happy to answer your every question, without ever treating you like a kid or brushing you off. Be ready to face the truth and your own fears with an activist attitude and that will give you more strength and understanding to work on your side.

You can still have fun but just don't blow it or you might blow a fuse. You might feel over emotional sometimes and that means take some calm quiet down time. Eat light, toss the fats, go with less or no meats and avoid stimulants which fire up our engines too high.

By the time I was your age I was a long-term lupie already and not yet diagnosed so Marvin was my alter-ego and I didn't even know it. But here I am, working as a healthcare researcher/writer in lupus and other autoimmune (AI) diseases, living as large as 5'3" can get and digging it all the way. Lupus actually turned out to be my road map and the journey is pretty good. Plenty of doctors said I'd be dead and gone by your age, then by my 20's, then any minute thereafter but here I am, still digging it.

Check out the links below and share them with your family and friends. One is my own lupie bio of a long, wild ride that ain't winding down yet. We can learn a lot from Ol' Wolfie, our lupine mascot, if we're inclined to be explorers and go for the good stuff - we can do plenty and be happy, wolf or not.

Write me back anytime and I'll be glad to help guide you through the woods and down the yellow brick road. Of course, we have to help pave it but it's a much better trip than you might think.

It can also help you and your friends become wiser, kinder, better people, for all the magical learning you pick up along the way. I care about you and won't forget you - please don't lose touch.
With Caring Concern,
Shar
Links:
Lupus Foundation of America http://www.lupus.org/newsite/index.html
Early Diagnosis of SLE in Childhood http://www.lupus.org/education/topics/early.html
Lupus Chronicle http://hometown.aol.com/pubpanda/index.htm
Lupus NewsLog (my home)
http://lupusnewslog.blogspot.com/
Shar - Living Beyond Acceptance
http://lupusnewslog-thrivers.blogspot.com/2004/03/shar-living-beyond-acceptance.html

Charles Said:

I just found out I have LUPUS disease and I am pregnant!?

We Answered:

You can find some really good, valid information on the Lupus foundation website. There are also links for support groups as well. Lupus manifests itself differently for different people, so it will be helpful to you to look at the different symptoms they list on the site. Lupus is an autoimmune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain. Normally the body's immune system makes proteins called antibodies, to protect the body against viruses, bacteria, and other foreign materials. These foreign materials are called antigens.

In an autoimmune disorder like lupus, the immune system cannot tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies directed against itself. These antibodies -- called "auto-antibodies" (auto means 'self') -- cause inflammation, pain and damage in various parts of the body. (Lupus Foundation website)


I'm sorry you discovered this at a time when you should be joyful about being pregnant. I'm really not certain how they will be able to treat you with medication as a result of your pregnancy either. Go to the "new to lupus" link on the Lupus foundation for more information. Good luck.

Ruby Said:

information on lupus disease?

We Answered:

There are varying degrees and forms of lupus, and it can attack any part of the body. Here is a site:

http://www.lupus.org/newsite/index.html

I have a family member who was diagnosed with lupus. She is doing wonderfully with very little discomfort or symptoms. Lupus can also be dormant at times.

Discuss It!

karen said:

i was diagnosed with lupus (sle)in nov. of 2000. i was 30yrs old. there was only one week in like jan. of 2001 that i felt reslly good, then after that it's just been one thing after another! all of my organs were included and my joints, skin. i itch all of the time. always sore in my joints and nauseaous! why don't i feel good? i've been feeling like this everysince i was a child!