I always laugh when I think about lupus awareness month (I know it’s not funny but..) as I don’t need a designated month to remind me about lupus (it’s always lurking in the background) but then of course lupus awareness month is not for me or for the others who are and have been ‘suffering’ (and I mean that literally) at the hands of this challenging and often debilitating condition.
It is for the thousands of other people who are affected by it’s debilitating grasp either through non/miss diagnosis or being a friend or relative of someone in that position.
Whilst you have to be in it to fully understand its’ nuances and intricacies it is important to understand how these trials and challenges may affect the person in your life as a result of this diagnosis.
lupus is not rare
On a world stage lupus is more prevalent than sickle cell anemia, AIDS, cerebral palsy, multiple sclerosis and cystic fibrosis combined yet many people have still not heard of it. and many more go through years of frustration, depression and despair through misdiagnosis.
So what exactly is lupus?
lupus is a chronic autoimmune disease in which the body’s immune system becomes over active but instead of serving its normal functions of protecting the body from bacteria & viruses, it forms antibodies that attack healthy tissues and organs.
As a result any part of the body is susceptible to attack but most commonly it is the joints, skin, brain, kidneys, heart, lungs and blood vessels that are affected.
There are four different types of lupus:
- Discoid lupus (also known as cutaneous lupus) affects the skin.
- Tumid lupus erythematosus (LE) is a relatively rare and only recently recognized subset of chronic cutaneous lupus.
- Systemic lupus erythematosus (SLE) attacks multiple systems in the body
which may include- the skin, joints, blood, lungs, kidneys, heart, brain & nervous system.
- Drug-induced lupus may develop after taking certain prescription medications. Symptoms generally disappear after the drug is discontinued.
lupus is a complex disease with many manifestations and no two patients suffer in the same way and their list of symptoms – from extreme fatigue, joint/muscle pain, rashes, hair loss, allergies, depression, mouth ulcers, miscarriage to heart, lungs & brain involvement or kidney failure 1 – is often different. These symptoms can be debilitating and in some cases life threatening.
Because of the diverse nature of the condition and its symptoms lupus is known as ‘the great mimic’ and it is not uncommon for people to go undiagnosed for years or to be diagnosed with other conditions such as multiple sclerosis, ME & rheumatoid arthritis before the true source of their ailments is discovered.
To add to the complexity of symptoms and challenges faced by patients, lupus is
known as the ‘look good, feel bad’ disease because lupus patients often look ‘well’ even in the midst of a severe lupus flare. This appearance makes it more difficult for people to understand what a lupus patient is going through.
The prevalence of lupus differs between communities, it affects 1 in 750 Caucasian (white) women and 1 in 200 Afro-Caribbean women and there are at least 30,000 people with the disease in the UK of whom 90% are female.
There is no known cure and although lupus affects each patient individually most patients’ experience ‘flares’ when the lupus is particularly active and ‘remission’ when the lupus is inactive.
The source of lupus is still unknown but it can be trigged at puberty, during the menopause, after childbirth, after viral infection, through sunlight, as a result of trauma or after a prolonged course of medication.
People diagnosed with lupus normally remain under medical care with continuing medication. Many symptoms have less impact as a result, but side effects can often occur.
Lupus is a serious condition that can adversely affect the lives of both those who suffer with the illness as well as their families & friends. Living with it can often be debilitating, but it is important to recognise that patients are more than the symptoms of the condition.
At www.laughingwithmrlupus.com we believe that laughter and a positive mental attitude are essential nutrients in the daily diet and can often be more potent than the regime of drugs prescribed by any physician. We encourage and support patients as they develop their own coping strategies to enable them to face the challenges that a ‘lupus diagnosis’ brings and of course to laugh more along the way.”