Systemic lupus erythematosus (Lupus)

My Wife: Obviously the effect on my wife has been worse. Not only does she suffer many of the symptoms - skin rashes, swollen and painful joints, tiredness, depression, susceptibility to sunlight etc, there are many other things that are 'side-effects' of Lupus.

Firstly there is fear - this is a fear of the unknown, a fear of dying and a fear for the family should she die. Although her Lupus is only 'skin deep' it can progress deeper and eventually damage the organs (I should point out that most women who contract Lupus live 40+ years with it).

Secondly, there is worry about appearance etc. Lupus causes rashes which are unsightly (to me my wife is and always be beautiful), and this leads to stress.

My Family: Like my wife, fear is one of the biggest problems. When your doctor doesn't really know much about the disease and how quickly it could become dangerous then you feel lost, blind and helpless.

Our children initially were scared that their mom was going to die; in fact our daughter became hysterical when she found out that one of the Backstreet Boy's sisters had died of Lupus. This fear has diminished as we have researched Lupus with our children and helped them understand that Lupus can be controlled.

I cannot stress enough the importance of research; finding out the truth about Lupus is very important - there are many misconceptions propagated by the press.

Myself: What can I say? My wife is my best friend, my lover and quite often my sanity. I cannot imagine life without her by my side. I try not to think about it, but there's a little part of me screaming 'What if she dies?' - I simply do not know what I would do!

I search my heart often and wonder if I am being selfish thinking these things, and come to the conclusion that I am not - it's natural for the spouse to be just as scared.

And then I look at my wife and I realize that my petty misgivings really mean nothing. My wife has Lupus, and also has had two surgery associated with cancer - and yet she is more concerned about me, my daughters and our extended family. She is always giving and always wears her heart on her sleeve. She is my champion.

I am proud of her; her vitality, courage and sheer determination is what holds my world together - if she can deal with all her problems and more - then my little worries become insignificant. As I ponder these truths my wife's own profound words come to mind:

"It is what it is"

Proof that you can live and prosper with the disease.: The Lupus so far has not turned into fully blown Systemic Lupus and therefore life has been a lot easier than it could have; there's always a niggling in the back of the mind as you wake each day, but we go on..

My wife has now lived with this disease for eight years. There have been weeks where she has been unable to leave the bedroom, but other days when she is brimming with energy and raring to go.

We've changed and adapted our habits to take into account the effects of lupus. We can't go to the beach often anymore - the sun really causes her Lupus to flare. An additional problem we've found is that even in the shade, the heat causes her to become very tired very quickly.

We spend more time going to concerts and theatres, and shopping indoor malls or visiting museums. We've found a way to keep our quality of life high while still understanding the risks associated with the disease.

She is not cured and probably never will be but we have come to terms with this fact and as the saying goes "Life Goes On".

I admire her courage and her willingness to go on despite this difficult disease!

What is Lupus?

Lupus is a long-lasing auto-immune disease. (As Auto means self, autoimmune means the immune system essentially attacks the body instead of fighting viruses and bad tissue.) The immune system is hyperactive and for reasons unknown attacks healthy tissue. These attacks have wide-ranging effects - see below for more details.

What types of lupus are there? and what are their symptoms?

Discoid lupus (also known as Cutaneous lupus) affects the skin - the symptoms vary (depending on the severity) - skin rashes, photosensitivity (i.e. sensitive to sun), & sometimes mouth or nose ulcers.

Systemic lupus attacks multiple systems in the body (generally more severe than Discoid) - the skin, joints, blood, lungs, kidneys, heart, brain & nervous system - the symptoms vary (again the symptoms will vary depending on severity) - Arthritis, muscle pain and weakness, fatigue, sun-sensitivity, hair loss, a rash across the nose and cheeks, fever, anemia, headaches, recurrent miscarriages.

Can Discoid evolve into Systemic?

Yes - about 10% of the cases of discoid lupus will evolve into systemic lupus (it is advisable to get blood tests annually).

What Causes Lupus?

No-one really knows. There are probably various factors ranging from your genes to certain triggers (such as environment or stress) Other triggers include Ultraviolet light, certain prescription drugs & antibiotics, infections or viruses, hormones (many women undergoing 'changes' suffer from Lupus.

Is Lupus hereditary?

Although it isn't proven, there is a high probability that Lupus is hereditary.

How Common is Lupus?

Lupus occurs more in some ethnic groups in others.

In Caucasians the figure is about one in a thousand.
In Africa-Americans the figure is closer to one in two hundred and fifty.
In Latinos the figure is near one in five hundred.

What doctors treat Lupus?

This depends on your symptoms and severity; generally your GP will be able to treat you or let you know which specialist to see. In sever cases a rheumatologist will control treatment. Others include dermatologist, immunologist etc. It is important that you make regular visits to the optician.

Do all sufferers have the same symptoms?

No, and this is why Lupus is so hard to diagnose. The symptoms and severity will differ from one person to the next.

What is a 'flare'?

Lupus can lie dormant (or in remission) for many weeks or months only to flare up. Flares usually indicate heightened disease activity.

Can Lupus symptoms change?

Symptoms will vary from week to week, however it is unlikely that the affected organ system will change

Is lupus contagious?

No.

Is there a cure for lupus?

No, but there is a great deal of research going on (especially with Genomes). Lupus can be controlled using medications

What are the treatments for Lupus?

As many of Lupus symptoms are due to inflammation the general treatment aims to control and reduce the inflammation. The general drugs used are Nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, antimalarials, & cytotoxic drugs (chemotherapy). I am not qualified to go into any real detail on each of these drugs.

Is there a connection between lupus & allergies?

Allergies produce specific antibodies to substances (e.g. pollen, grass, smoke etc). Lupus sufferers are often sensitive to the same substances.

Is lupus fatal?

The majority of people (90%) with Lupus WILL LIVE A NORMAL life span. This is due to the fact that detection of Lupus has improved over the last twenty years and medication is able to control the disease.

What are the most common causes of death with Lupus?

Generally the two major causes of death are kidney failure and overwhelming infection.

Are people with lupus more likely to develop cancer?

There is no link between Lupus and cancer; however those receiving certain chemotherapy drugs as treatment do have a higher risk of developing cancer.