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Keoni
New Member


Date Joined Jun 2014
Total Posts : 1
   Posted 6/16/2014 9:44 PM (GMT -6)   
Hi. My sister just told me that her daughters doctor is going to run some test to see if her daughter has lupus. She is worried and I wish I could help her and say everything is all right, but we don't know. She is 9 and she not sure yet of what she has. I guess I just need support and information from someone who know about the disease.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/17/2014 2:01 AM (GMT -6)   
Welcome to HW.
You're a good sister to want to help out. The thing about lupus is it's hard to diagnose. You need to be there for your sister and help calm her. Don't worry if it's lupus until the doctor says it's lupus.
Once the decision is made then start looking up the information.
The information out there is scary, but the disease can be managed.
I hope your niece doesn't have it and she can be cured quickly.
Tell your sister to come visit us for support.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

entero
New Member


Date Joined May 2014
Total Posts : 12
   Posted 6/17/2014 12:31 PM (GMT -6)   
If she is diagnose with lupus please don't just allow these "doctors" to give her those horrible medications. Here is what, i believe, real treatment is: take her to a alternative integrative doctor. They do more extensive testing to find out the reason why, they don't just mask the symptoms. the answer usually lies among the following: toxicity(specially from vaccines), G.I damage(again vaccines, and antibiotics), adrenal issues, mineral and/or vitamins deficiencies, food allergies, and others. Hope it is not lupus. good luck.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/17/2014 6:46 PM (GMT -6)   
Lupus is when the body turned on itself. The germ identifying cells will mistake the healthy cells in your body and attack them. This causes swelling and inflamation in the area. If the attack is severe enough the area will be damaged.

There is no cure for Lupus. It is managed by medications that suppress the immune system down to "normal" levels to prevent the attacks.

It's like the opposite of AIDS. With AIDS you have no immune system, with Lupus you have too much immunity. But you can't catch Lupus, it just turns on.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

entero
New Member


Date Joined May 2014
Total Posts : 12
   Posted 6/17/2014 9:32 PM (GMT -6)   
Quote"There is no cure for Lupus"

You are right. I just don't know how much right you are.

Quote"It is managed by medications that suppress the immune system down to "normal" levels to prevent the attacks."

You are both right and wrong. meds are not the only nor best way of treatment.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 6/17/2014 10:08 PM (GMT -6)   
Entero, After a lupus diagnosis, before I would forgo traditional medicine for solely alternative treatments, I would do my homework and get a couple of opinions. Lupus is not a curable disease. My lupus went from being very active to the point that I spent three years incapacitated to being 'quiet', but not before I spent several years taking immunosuppressants. One of our forum members who had kidney disease caused by lupus was on dialysis for a few years and just had a successful kidney transplant. People can die from lupus.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 6/17/2014 10:13 PM (GMT -6)   
Koenig, good luck with your niece. Joy gave you good advice!
SLE, fibro, renauds, restless leg?

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 6/18/2014 1:39 PM (GMT -6)   
Keoni,

One of the best ways to learn about Lupus is to read on the website www.lupus.org. There you will see the 11 main symptoms that generally indicate Lupus.

One of the main things to know is that GP's/PCP's generally run an ANA test before deciding if something is indicative of Lupus or not. Then, and only then, they will refer to a rheumotologist - the rheumotologist is the Dr fully trained and experienced with Lupus and many other auto-immune diseases. The "hidden trap" in this is that ANA is NOT a firm indicator of yes/no for Lupus. If your niece is showing 4 or more of the listed symptoms, your sister will want to take her to a rheumotologist regardless of what the GP/PCP is advising (and regardless of the ANA results).

A good way to find a rheumy who is "good at" Lupus is to visit the Lupus website above, find your local chapter, then ask what Drs are active on their advisory board -- these are the Drs most interesting in helping Lupus (and other auto-immune) patients.

Let us know how it goes.

PS. This website is neither pro or con on various treatments -- treatment advice is solely that of the individual.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde
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