Comments on: World Lupus Day May 10

By: Anand

Anand — Thu, 09 Dec 2010 00:08:02 +0000

Hi, My girlfriend is suffering with lupus for last 10 years and she is in India, Can she be treated and cured any where? Please help me. can contact on my email anytime.

By: maggie

maggie — Fri, 02 Oct 2009 16:38:10 +0000

Hello everyone,
I was diagnosed with Lupus by three doctors, bue when I went to the Rehumatologist he said he would treat me for Fibromyalgia and gave me Gabapentin. It does help for my pain in my joints, muscles and skin, although when I get the flares nothing works. I can’t stop taking Advil even with the Gabapentin and I am afraid that if the Lupus doesn’t get to my organs, Advil will.
What do you think?

By: Julie

Julie — Fri, 01 May 2009 00:32:14 +0000

I have had lupus since I was 12, (I am now almost 55, but was not diagnosed until I was 25) so I have known about lupus for 30 years.
Over this time there has been several changes in treatment etc.
There are lots of other diseases that mimic lupus so it is important not to put all your symptoms down to “it’s lupus”.
You can have secondary illness such as sjogrens syndrome or fibromyalgia.
I think the most essential asset for some one with lupus is a caring and understanding GP who will oversee treatment from a variety of specialists and other health professionals as needed.
As I have had lupus for over 40 years (with lots of complications and hiccups along the way) it is important that other patients know they can live life to the full as much as possible, rest when you need to and enjoy life along the way

By: leanne

leanne — Fri, 05 Dec 2008 03:06:24 +0000

i have sle for 19 yrs and had many complications with it from kidney probs to epilepsy,my bones are the most damged though and living with sle isnt easy,it takes time to come to terms with it and learning to to panic is a good thing.bless anyone who has it and honestly be kind a smile cost nothing. we appear well mostly so when your body wont allow you to do what you need to people question you,never do that just understand that life isnt always easy and people living with sle are really living in constant pain.be safe rest when you can lee

By: Kitty

Kitty — Thu, 17 Jul 2008 18:45:14 +0000

I have been diagnosed with Lupus and Sorgens Syndrome. I didn’t spell this word correct. it is a dryness of the mouth and skin. My eyes are a little dry but not bad. I am 61 years old and was just diagnosed with this terrible disease a few years ago. I am ok and the doctor doesn’t think that my case will be any worse. My joints do not hurt in any way. If I continue this way I will be happy camper.
Thank you

By: Patric

Patric — Wed, 28 May 2008 10:47:24 +0000

Thank you all for your support and information, it is my hope that by speaking more about invisible diseases like Lupus we will help find a cure :)

Patric x

By: Mark

Mark — Thu, 22 May 2008 05:51:04 +0000

Lupus is quite nasty. My wife is treating some sufferers of Lupus with acupuncture and I believe also with traditional Chinese medicine and has had some great successes.

She has not been able to cure them but at least in one case she has been able to drastically reduce the pain and fatigue to such an extent that this patient is working full time again. Before the treatments this patient was not able to work or enjoy life much.

I am writing this to raise awareness of alternative treatment methods that I know for a fact have provided more and longer lasting relief as compared to western treatments.

By: Robyn.

Robyn. — Wed, 21 May 2008 11:13:56 +0000

A bit after the fact I know, but Monash Medical centre in Melbourne is opening the first ever research unit in Australia for S.L.E.

By: Aurel

Aurel — Wed, 14 May 2008 05:57:27 +0000

This is a very nce information about LUPUS. I feel that this disease is not well socialized in my place. But, on the world lupus day, several activis down to the streets and gives free brochure re. this disease. I think this is a very nice start for us.

By: frogpondsrock

frogpondsrock — Mon, 12 May 2008 08:22:57 +0000

Two of my girlfriends have lupus, .. My daughter has CFS , a lot of her symptoms are very similar to lupus.. *sigh*

I will send a linky of this page to my friends.. thanks kim