World Lupus Day May 10
If you are a fan of the television show “House”, you just might have heard of LUPUS before, as it seems to be Dr House’s default diagnosis most of the time. But really the most common response I get when I tell people that I have suffered from Lupus for 19 years is, “Lupus …what is that?”
So…What is Lupus (SYSTEMIC LUPUS ERYTHEMATOSUS OR SLE)
Lupus is the Latin word for wolf. The term has been associated with the disease since the 10th century. Erythematosus means redness. It is said that the name was given to describe the skin lesions, which typically are red and perhaps at that time in history were thought to resemble the bite of a wolf. Of course, not everyone with lupus has rashes or skin lesions, in fact, it seems that no two Lupus sufferers ever have exactly the same symptoms.
The Disease.
Lupus is an autoimmune disease. A normal healthy immune system recognises and destroys bacteria and viruses. With autoimmune diseases, however, the immune system starts to attack objects that are not foreign, becomes hyperactive and attacks normal tissue.
With lupus, the immune system produces antibodies that attach themselves to various structures in the body. These antibodies in the tissues can cause inflammation, damage and pain.
Although lupus can affect anybody, 90% of lupus patients are women. Of these, 90% develop the condition during their child bearing years.
Lupus is a very changeable disease that also mimics alot of different conditions and is therefore usually difficult to diagnos. While it has many characteristic symptoms, most patients will never experience all of them and no two patients experience identical symptoms.
The severity of the disease also varies. In some patients symptoms appear suddenly and are relatively severe, while in others the disease remains at a low level for several years before diagnosis.
Lupus runs an unpredictable course. For some people, symptoms subside after treatment of the initial acute attack. For others, periods of “remission” are punctuated by”flare-ups” of disease.
Lupus can affect any or all organs of the body.
People of all races can have lupus; however, African American women have a three times higher incidence than Caucasian women. Statistics show that Lupus is also more common in women of Hispanic, Asian, and Native American descent.
Symptoms.
Lupus symptoms can vary greatly from person to person, but below is a list of symptoms that might indicate the presence of lupus in an undiagnosed person.
* Achy, painful or swollen joints
* Persistent fever
* Prolonged, unexplained, extreme fatigue
* Skin rashes, including a butterfly shaped rash across the cheeks and nose
* Pains in the chest
* Anemia
* Protein in the urine
* Sensitivity to sun or ultraviolet light
* Hair loss
* Blood clotting problems
* Fingers turning white and/or blue in the cold
* Seizures
*Persistent mouth or nose ulcers
Lupus can cause disfiguring rashes and scarring, multiple miscarriages, kidney, heart and lung failure, impaired neurological function, strokes, heart attacks and death.
Many people with lupus are unable to maintain employment or attend school because of extended Lupus-related absences and hospitalizations. A majority of those affected must live with debilitating pain and profound fatigue which greatly affects their quality of life.
Can I Catch Lupus?
No, Lupus is NOT contagious, not even through sexual contact.
Getting Help.
Most states of Australia have Lupus support groups
World Lupus Day.The benefits of awareness and early diagnosis are the primary reasons that Lupus organizations around the world, large and small, have agreed to unite to observe World Lupus Day and conduct activities that call attention to the need for improved patient health care services, increased research into the causes of and a cure for Lupus.
So now the next time you hear that someone has Lupus you will not be left wondering, “What is Lupus?”
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May 10th, 2008 at 8:51 pm
I feel for anyone that has such a debilitating disease, I’ve just been diagnosed with rheumatoid arthritis but SLE starts at such a young age at least til now I’ve been relatively healthy.
May 11th, 2008 at 8:24 pm
TV shows CAN be useful at times for awareness (if they’re accurate). The only time I’ve ever heard of Lupus is on All Saints where one of the nurses was diagnosed.
This is a great informative article. Sounds like a really rough condition to have.
May 11th, 2008 at 10:58 pm
Thanks for sharing this MG… I didn’t know all this.
I hope your symptoms and are settling and you new drug is giving relief.
I heard of Lupus a long time ago when I spent a day as student nurse in the maternity / labour ward with a women in labour and she had Lupus .She was induced early because of it.. ..I had to do a case study on her.
I had to go home before she delivered unfortunately.I couldn’t stay without my tutor.
An acquaintance of mine has Srojens (?) too .
May 12th, 2008 at 7:22 pm
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
May 14th, 2008 at 4:57 pm
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.
May 21st, 2008 at 10:13 pm
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.
May 22nd, 2008 at 4:51 pm
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.
May 28th, 2008 at 9:47 pm
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
July 18th, 2008 at 4:45 am
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
December 5th, 2008 at 1:06 pm
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
May 1st, 2009 at 10:32 am
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