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Hi Everyone.

I found out on the 12th June that I have SLE. I'm still very confused and nervous about the whole thing. I live in South Africa. Is there anyone on this site from SA? I'd like to get in contact with people around here.

I've read a few scary website's about people only living 5 years...etc. Tell me this is all not true and those website's are out dated? Once I have my symptoms under control does life carry on as normal?
 

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The one and only
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Hi Wendy,

Welcome to the site. Yes, there are horror stories about lupus, but don't get the wrong idea, There are a lot of people with Lupus that are living normal happy lives. There are men and women on this site that have had this disease for years but have maintained their lives.

I know that this diagnose has probably been a slap in the face, and you will need time to take it in. Trust me, a lot of your questions can be answered on this site because there is a wealth of knowledge and information given.

I am from the United States, but I know people are from all over the world that visit.

Good luck to you take this disease day by day and please don't let it get the best of you.

Best of Luck and lots of hugs!
 

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Inky
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Hi Wendy

Welcome to the site. If it is any consolation I have had lupus since a teenager (misdiagnosed as various other things until I was in my forties but consultant says teenage illness was classic lupus). I am now 53 and alive and kicking. There are different degrees of severity of lupus and everyone has a different response to drugs used to treat it but treatment has improved and docs have more experience now than ever. Do you have a rheumatologist or consultant that knows about Lupus? That is really important as a good specialist is a terrific help.

Yes lupus is scary, but a lot of stuff on web sites is not entirely accurate and some of it plain wrong. If you stay with sites such as the Lupus Foundation of American, Lupus UK, Joanne's lupus site (to which this list is affiliated) etc.

I find anything on the web with too much colour, lots of music and fonts that flash on and off is NOT a good site usually ;). I stopped visiting the scary websites within days of finding Joanne's site and joining a chat room/lupus list (a US one at the time).

This is a fabulous list, lots of very experienced people who understand what you are going through. They have really helped me through my recent dip into a lupus flare. There are a lot of people with lupus who are not on this list because their lupus is controlled and they are out working and leading full lives. I have been more better than well in the last two years for example. My lupus goes up and down and some patches are very good indeed, others not so good. But everyone is different and I learned not to do too much comparison.

My recommendation is the same as specialk6. Take it a day at a time. And don't push too hard through pain and fatigue, get rest if you need it. I am bad at this and it always backfires when I forget. Ask any questions at all here, someone will be able to help and support you.

Sorry I am not in SA either, but someone may well pop up for you.

Love
Sara
 

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Hi there Wendy and welcome :)

Yikes yes!!! those websites are out of date. Most lupus patients have the same life expectancy as anybody else and although lupus is a serious disease and CAN be fatal for some people, treatment has improved greatly over the years.

My Mum has dermatomyositis and lupus and is now 70 with a whole lot more energy than me. She says the disease has lessened in activity in recent years. Unbelievably, when she was diagnosed her doctors told her that it was fatal (as in imminently). I was eleven at the time and remember it well. Thankfully they were way wrong and are a good illustration of how important it is to deal with doctors who are auto-immune specialists.

The general rule is to discount any info older than 5 years old. You have to be very careful with the net, as although it is a useful tool and provides invaluable support through sites like this one, it can also scare you half to death.

I live in Belgium and there aren't any support groups here at all so I get all my information and support through this site.

some useful addresses for info :

http://www.londonlupuscentre.co.uk/contact.html

http://www.lupus.org.uk/index.php?i=14

http://www.hopkins-arthritis.org/arthritis-info/lupus/

I have noticed at least one other member from SA but I'm not sure if she posts very often.

I hope that helps a little, bye for now,

Katharine
 

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Hi Wendy,

Welcome to this site. I am so delighted that you posted here because I'm also from SA AND also in Umhlanga!!

I was diagnosed in Feb this year so I'm still constantly on a learning curve about SLE. I also Have Sjogren's Syndrome which is also an Auto-immune disease.

I'd really like to keep in touch with you!

ColleenT
 

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Hi Wendy,

A quick WELCOME :)

And to put you at even more ease, I was diagnosed a few days ago. Like you I panicked. And then I panicked some more. And, when I read some info on the web... .... ....

Then I went to some official websites - all of which have been linked to on here.

And then yesterday I joined this forum, and in just a day I have managed to put a smile on my face.

Seriously though Wendy, what I do suggest is have a look through all your results (blood and urine). If you don't have these results, ask your dr for a print out and then see how many of them are not normal. Have a look at all your symptoms. Analyse how you have been feeling over the last few months. And then compare your overall picture to some of those on here. But one thing you must not do is either panic nor get complacent.

I hope this site has the same effect on you as it did on me :D
 

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Hi Wendy,

I hope I can help you be a little more at ease. My mom was diagnosed with SLE about 30 years ago. She has lived a very normal life - working, rasing kids, square dancing, travelling. She had a hard time right after being diagnosed with depression, but then she decided she wasn't going to give into the disease and that it would never get her down.

She has various things wrong with her now, but she's still fighting and still very positive.

Welcome to the site. You are in the right place here!!!

Melissa
 

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Hi Wendy,

Don't worry I have had Lupus for 5 years, I work as a teaching assitant for 25 hours a week have 2 kids aged 14 and 11 and am also studying a teaching degree, with correct medication you can lead a normal life....I'm not saying that its the answer to everything...I still have flare ups and lots of pain but I have learnt to manage it....with pain relief and knowing when I have done too much... rest is important...don't overdo it.

Take care

Nicola
 

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The vortex of insanity!
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Heyyy Wendy!

No need to panic yet, lupus is usually a manageable disease. You have to remember when you're on a message board that often the people posting are struggling, and that there are also people out there with hardly any symptoms, who aren't here because they don't need the support that those of us who struggle do.

I've had lupus for 9 years, I was diagnosed when I was 9 years old and I wasn't supposed to live to go to college, but hey! I start college in LESS THAN A MONTH :D There's a happy ending for you. :)
 
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