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My sister was just diagnosed

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Posted 1/28/2009 9:53 PM (GMT 0)
Hi everyone,

My sister was just diagnosed with SLE recently.. about 3 weeks ago to be exact.. and since they have done test after test to confirm it. It seems now that the latest results show that there is some kidney involvement (+1, if that means anything to anyone?).. anyway, we are all coming to terms with all this, and what it means. Her symptoms are swelling (especially eyelids and ankles/feet), joint pain, extreme headaches, and she did have a rash on both legs for a few days recently. She is 31 years old. These symptoms started in september, exactly one week after having gallbladder surgery. We still dont understand how this could have nothing to do with that.. has anyone had a similar situation with onset?? It seems strange to us that she was fine just before the surgery, and then had lupus right after? So we thought for a while maybe it was drug-induced, but it looks like that's not the case.. Anyway, the reason i am writing is just for some advice. We live in New York City. Does anyone know of good resources? groups maybe? More than anything I dont want her to feel alone through this..

Thank you! This is a great forum.
Posted 1/28/2009 10:45 PM (GMT 0)
You've found one great resource here! To find local info, check with lupus.org and they can give you the local chapter by zip code. Then contact the local group - they'll know what's going on in the area, and are also a good source of lupus-aware rheumatolgists! Welcome to our group!
Posted 1/28/2009 11:14 PM (GMT 0)
I'm sorry to hear about your sister. I know this is a very stressful time for her and you all.

 

It's not unusual for lupus to present itself after a surgery. Somehow, the immune system gets off course and is thrown into a tizzy, causing it to all of a sudden turn on itself and start battling not only the bad things in the body, but the good things as well. That is what causes all the inflammation and problems.

 

A bad infection can also make the immune system turn on itself.  Did she have an infection post-operation? 

 

What is unusual is how quickly she got a diagnosis and how fast she started to have kidney issues. It usually takes time (many years) to acquire so many symptoms and organ involvement.  Although, each person is different.

 

I would encourage her to join the group here too.  She can learn a lot and not feel so alone in what she's going through.

 

Blessings,

Ginny

Posted 1/29/2009 5:21 AM (GMT 0)
hp_nyc,

Lupus is something that your sister has most likely had for many years, yet it has been dormant in your body. I have read may books and articles that state the body can trigger the Lupus from a dormant state by going through a tramatic event, such as surgery, a stressful situation, like a divorce or death of a loved one, a serious virus or infection in the body, you get the idea.

Here is some info I found on the Lupus Foundation of America website. http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=311&zoneid=9
The cause(s) of lupus is currently unknown, but there are environmental and genetic factors involved. Some environmental factors which may trigger the disease include infections, antibiotics (especially those in the sulfa and penicillin groups), ultraviolet light, extreme stress, certain drugs, and hormones.

Scientists believe there is a genetic predisposition to the disease, as lupus is known to occur within families. However, there is no known gene or genes which are thought to cause the illness.

Most likely the infection or the surgery itself from the gallbladder surgery could have triggered your sisters disease.

Melissa
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