What the feck is Lupus?

Lupus? What's that?

This is the best website with regards to Lupus information - http://www.lupus.org.uk/what-is-lupus

The main symptoms of lupus include:

Joint pain
Skin rashes (especially after sun exposure)
Hair loss
Memory problems
The thin “sausage-skin” covering internal organs such as the heart (pericardium) and lungs (pleura) can be inflamed leading to painful symptoms such as pleurisy.
The kidney is the “silent” organ and often patients do not know that the kidney is involved;  Urine testing is essential in lupus patients for the early detection of kidney involvement, for which treatment must be prompt.
In extreme cases - Organ failure which is why it's so important to be monitored closely
Lupus can also attack the central nervous system - although this is not common

90% of Lupus sufferers are women and it especially affects women in their child bearing years which is just down right flippin' cruel as it can also cause pregnancy complications/problems conceiving. 

There are two main types of Lupus - Discoid lupus which is limited to the skin and Systemic Lupus which basically means ANY system in the body can be affected.  I have Systemic Lupus.

In lupus the immune system is over-active and a bit mental.  It attacks the body's healthy tissues and organs (as if they are a threat) causing inflammation/pain/possible long term damage.  In order to dampen down the affects of Lupus I take immune suppressant drugs so this makes me more prone to infections....hence why I'm always unwell.

Lupus is a serious illness which must be closely monitored.  I have my check ups at St Thomas' hospital in London where they have a whole unit dedicated to Lupus.  I go once every three months and will do so for life.  They are wonderful and amazingly aren't funded by the NHS - they are a charity and I would be lost without them. 

There is currently no cure. 

In my case (lupus is different for each person, they call it a snow flake disease because no two cases are exactly the same) I suffer with agonising joint pains, sometimes so bad I can't move, muscle pains and painful spasms,  night sweats (every single bloody night) general aches, weakness and EXTREME fatigue.  Like, to the point where I can't function, it's debilitating.  

During a flare up (when the disease is more active) these symptoms are much worse than usual and sometimes I spend a week in bed unable to move for the pain/tiredness.  Flare  ups can last a few days to a few months.  I am currently in a 6 month flare up.  

When the disease is hardly active at all this is called remission.  The longest I have been in remission for was around 4 months.  Those 4 months were AMAZING!

Nowadays I very rarely have a day off from the illness, if it's not severe then it's usually simmering in the background.  I am always aware of it.

I was shocked to discover that as recently as 20 years ago Lupus was considered a terminal illness with patients being told they had around 5 years to live.  Thankfully nowadays this is rare but Lupus is still potentially fatal as it can damage the organs (especially the kidneys and heart) as well as the joints and skin.

Here is a link to some of the possible complications people with Lupus may face: 

Approximately 1 in 3 people with Lupus have another Autoimmune condition.  I am one of these people - I have Hughes Syndrome, Sjogrens Syndrome and Fibromyalgia.  All of which pose their own complications/nasty symptoms.

When I was told I had Lupus, I had NO IDEA what it was.  I had not heard of it at all so I have now made it my mission to raise awareness in order to for the world to gain a better understanding of this mysterious disease.  Hopefully one day there will be a cure.

Thanks for reading xx

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