Wednesday, 8 May 2013

May-Lupus Awerness Month.

'Systemic lupus erythematosus (Listeni/sɪˈstɛmɪk ˈlpəs ˌɛrɪθməˈtsəs/), often abbreviated to SLE or lupus, is a systemic autoimmune disease (or autoimmune connective tissue disease) that can affect any part of the body. As occurs in other autoimmune diseases, the immune system attacks the body's cells and tissue, resulting in inflammation and tissue damage.[1] It is a Type III hypersensitivity
reaction in which antibody-immune complexes precipitate and cause a further immune response.'

 May is Lupus Awareness month. The month when those of us living with Lupus or Systemic Lupus Erythematosus, (SLE for short) try to raise awareness of the condition and even raise money to help researchers trying to find a cure. For those out there who haven't a clue what I'm talking about, Lupus is a condition where the body's immune system fights against itself instead of protecting it. Lupus is the Latin for wolf and just as a wolf has the reputation for being sneaky, so Lupus tends to sneak up on people.

It can flare up at anytime and can potentially attack any of the body's major organs, including the heart, brain, liver and kidneys, amongst other things. Kidney failure and arthritis are the two most common manifestations of Lupus but there are many sufferers who have been affected in more than one part of their body. One of the common features is a Butterfly rash on the face, hence the adoption of the butterfly as the symbol for Lupus. The majority of sufferers are women, but it does affect men and even children too. It can strike you when you least expect it and many people are thought to be Hypochondriacs for many years before they are properly diagnosed. I know I was.

At best us Lupus Warriors get tired very easily, have funny rashes on our bodies and if we go down with an infection, it can take a long time and more than one course of antibiotics for us to be well again. The ironic thing about it is that we often don't look sick and I know from personal experience that there have been times when I've been feeling at my worst when people have commented how well I'm looking, even doctors! If I tried to write about every possible way in which Lupus can affect someone, I'd have to write another 'War and Peace' length blog. What I can write about is how it has affected me personally.

I consider myself one of the lucky ones. Although there have been times in my life when I've been seriously ill to the point that the doctors told my family that they didn't think that I was going to make it, I haven't been left with any serious on going disability as some of my fellow 'Lupies' have. Lupus has attacked my Autonomic Nervous System, causing me to be unable to eat or drink, not even a sip of water, I became so emaciated that the doctors inserted a tube into the vein leading to the heart in an attempt to get some nutrition into me, which caused a blood clot that would have killed me if it had shifted and entered my heart. I had a stroke which the doctors weren't sure was a result of small blood clots entering the brain or because the Lupus was attacking the nerves in my brain.

I've had flare ups of Rheumatoid Arthritis as well as many, many infections which have led to me being allergic to several antibiotics. Lupus has also caused me to lose two babies and my eldest son had a pacemaker inserted at the age of eleven because of damage done to his heart by Lupus antibodies. I need to take tablets every day and have injections every 3 months.

Yet I still consider myself one of the lucky ones.

The drugs that the doctors use to manage Lupus symptoms are themselves potentially harmful, such as steroids and even some cancer drugs. Lupus not only affects the person suffering from it, but also has an impact on the lives of their families and friends. As yet the doctors don't know what causes it and there is no cure. It can, if your lucky, disappear just as easily as it appeared, or so I'm told.

I know that there are many other conditions and diseases that deserve as much consideration and research as Lupus. But this is May, Lupus Awareness month and I'm hoping that making people aware of how Lupus can affect someone, then if they come across someone living with Lupus they'll be more understanding. I'm praying that one day soon there will be a breakthrough and a cure will at last be found.
(With thanks to the World of Lupus and Atlanta Titus for the Lupus pictures!.

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