Lupus Awareness MonthOctober is National Lupus Awareness Month; the aim is to increase awareness and educate the public about Lupus. Systemic Lupus Erythematosus and Discoid Lupus are both known as 'Lupus', which is an autoimmune disease. Autoimmune diseases cause inflammatory to the human body's small blood vessels and connective tissue. The connective tissue is the substance that contacts all of the body organs together and due to Lupus disturbing this, many abnormalities are caused in the functions and structures of the vital body organs. The affected body organs are the kidneys, heart, brain and lung. Lupus also affects the skin, joints, blood, nervous system and the gastrointestinal tract.
Lupus causes an inappropriate immune response which sources the body to produce antibodies to attack its own cells; the reason for this response is unknown. The symptoms of Lupus vary between individuals, symptoms include; rashes after being in sunlight, face rashes, joint and muscle pain, anaemia, fever, depression, mood swings, ulcers of the mouth and nasal, flu-like symptoms, weight loss, muscular weakness, fatigue, hair loss, reduced appetite and intense sunlight sensitivity.
Lupus affects 1 out of every 700 Australia; these can be males and females, although it is 10-15 times more common in females. Due to research and various types of medication those who suffer from Lupus often live a normal lifespan although they can experience incidents that affect their quality of life. Lupus has been detected in children as young as 2 years old, early diagnosis is extremely important as if not treated Lupus can cause irreversible tissue damage, however, Lupus is often hard to diagnose as the symptoms are subtle and often non-specific to one disease. Although the cause of Lupus is unknown it is said that: hormones, pregnancy, infections, antibiotics, ultraviolet light, extreme stress and certain drugs can trigger Lupus.
Lupus is not infectious or contagious and only 10% of those with Lupus have a close relative who also has the disease. Lupus is treated with non-steroidal anti-inflammatory drugs, anti-malarial drugs, corticosteroids, immunosuppressants and prognosis medications.
Interview with Grace SkarvellisHow does Lupus affect you now?
Grace Skarvellis: I am lucky now, as I don't have many issues from the Lupus. It occasionally flares up, my face goes red and I develop some arthritis in the winter, but both are manageable. I am also on medications for the rest of my life, however, you learn to deal with that.
How did Lupus affect you when you were young?
Grace Skarvellis: I was first diagnosed at the age of eight, over a few months I got very sick. I was already on a high dose of cortisone, which made me really overweight.
It was hard at the time because I was in grade two when I had my first big flare up. I was in and out of hospital; for many needles and I was in a lot of pain. Lupus caused my juvenile rheumatoid arthritis as well as kidney issues. It was very hard to deal with because I didn't understand and I missed out on a lot of school. I could never go out and play as I always sick. I didn't have many friends as I barely was at school and it was on numerous medications which made me very emotional and stressed. It didn't get any easier once I began high school; I was still very sick and I developed deep vein thrombosis when I was 14, I have been on anticoagulants ever since.
I was really lucky that I met some great friends and my family was amazing during my whole lengthy ordeal. Still, it took its toll on me.
I joined a peer support team at the Royal Children's Hospital called ChIPS. ChIPS supported me a lot; it was refreshing to know there were other teenagers out there that also had chronic illnesses and that helped me come out of my shell. Now I'm very lucky I can live an almost normal life.
How did you find out you had Lupus?
Grace Skarvellis: I found out just after my eight birthday, I had a really bad red rash on my face; I went to the local doctor and they had no idea what was wrong. I was then sent to a few specialists and it took months to diagnose as it is rare for an eight-year-old to get Lupus, because of my young age. Not long after that I got really sick.
How do you describe Lupus to your friends?
Grace Skarvellis: I tell them I have Lupus also know as S.L.E. Systemic Lupus Erythematosus. It's an autoimmune disease, which affects all the organs of the body including the skin, I have arthritis and fatigue from this. I also have Lupus induced DVT which can never be cured and I need to be on medication for the rest of my life.
It is hard. Most people have no idea until they see me sick or I tell them. It is very hard to explain, as the disease itself is very complex. Also the fact that most older woman experience Lupus means a lot of people and doctors don't understand.
Yes, I will admit it has been a hard road. And unfortunately with Lupus you never know when and if you're going to get sick again. I am very lucky that I have come out this a stronger and wiser person. It's a very weird disease with no cure nor do they know how it is caused. I am very lucky that I have a strong support group surrounding me.