Lupus?

[jama]

Can anyone give me any information or experiences with lupus? My DS14 has been diagnosed and I don't really know anyone that has dealt with this.

 

[JessicaR]

I'm sorry your son was diagnosed with lupus. There is much that you and he can do to deal with it. Rheumatologists specialize with diseases of this nature and would be a great option if you haven't already done that.

These are very informative websites that you can use to educate yourself.

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

http://www.mayoclinic.com/health/lupus/ds00115

http://www.nlm.nih.gov/medlineplus/lupus.html

This is a Lupus Forum

http://forum.wehavelupus.com/

I am sure you will get some hands on advice I just wanted to give you some resources.

 

[DisneyGirl421]

I have lupus. I was diagnosed about a year and a half ago, when I was 19.
It was hard to deal with at first, and I had some trouble coping with it, but I have gotten everything under control.

I see a Rhuematologist in Baltimore, at St. John's Good Samatarian Hospital. My symptoms of lupus are mainly the constant fatigue and aching joints in my fingers and toes. Sometimes, during a flare, my fingers hurt so bad I can't even hold a pen. Fortunately, I don't have the sun sensitivity *knock on wood* but I know most lupus patients do.

Going to college with constant fatigue is rough, I'm not going to lie. I have to make sure I get plenty of sleep, or I will have a flare. I've only had two flares since I've been diagnosed, and both of them were caused by too little sleep and stress (they happened right after midterms and finals). But you adjust to it. The disease doesn't control my life, I live a normal college life. I studied abroad this past fall, as well as living on my own in NYC this summer.

Those websites that Jessica gave you are great, I have read a few of them. If you have any other questions, let me know! Keep a postive outlook, and definitely educate yourself and him so you can make the best out of it!

 

[Scurvy]

Most of the women in my family have Lupus. I strongly suggest that you find a good Rheumatologist. Most importantly though I suggest that you take everything you find online with a grain of salt. Many of the things I have found online talk about the "worst case scenerio" when it comes to Lupus, and it can seem like it's a much worse diagnosis than it actually is for many people. It is much less common to hear about the less severe cases even though there are lots of people who don't have to deal with the worst of the possible symptoms.