Published on May 10th, 2014 | by Vanessa De Mello0
World Lupus Day
Imagine sitting inside, glancing out through your window seeing the brilliantly shining sun. It’s one of those rare days in Aberdeen with clear blue skies and warming sunshine. You’re itching to get out, take a walk around Forvie, look at the dolphins and just bask in the sunshine. But you can’t, because your disease is hindering you as your symptoms get progressively worse if you’re in direct sunshine. However, with proper treatment and management you are able to live an almost normal life, despite having this chronic condition.
Not many people actually realise that you are ill, as your disease often doesn’t show on the outside. You can look as healthy as a horse to someone, despite your condition. This is one of the reasons it took you two years to get a diagnosis. You did not have all of the symptoms and your GP did not send in for the relevant blood works. Two misdiagnoses later though you know you are not alone. 1 in 3500 UK residents suffer the same fate as you do, locked inside on this beautiful day.
You have lupus (avid followers of the hospital drama House will smile knowingly now!) and May 10th is World Lupus Day, which is why we’re dedicating a blog post to this often so hidden disease. What is lupus and why is awareness of it important? Vanessa De Mello explains.
What is lupus?
Lupus disease is a multi systemic autoimmune disease, where the body’s natural defences start to attack healthy cells, tissue and organs. There are three main types of Lupus:
- Systemic lupus erythematosus (SLE)
- Discoid lupus erythematosus (DLE)
- Drug-induced lupus
Systemic lupus is usually what people refer to when describing lupus. This type of Lupus can affect almost any type of tissue or organ and its severity can vary. The timelime of symptoms is unpredictable and often a mixture of disease onset and remission. Even with milder symptoms SLE can impact a person’s life through symptoms of pain, chronic fatigue, anxiety and depression. SLE is not very common, but 90% of cases occur in women between the ages of 15 and 50. Because of the difficulties in picking up all the symptoms of lupus, Lupus UK maintain there is a large number of undiagnosed sufferers as well.
There is no cure for SLE. 50 years ago the disease was regarded as terminal, with patients dying within 10 years of diagnosis. Current treatments usually focus on alleviating symptoms by suppressing the overactive immune system, and patients are also advised to stay out of direct sunlight as this can exacerbate symptoms. There is an ongoing effort to help educate patients and their families on how to manage their condition efficiently.
Discoid lupus is another form of the disease that only affects the skin, often considered as the ‘milder’ form, but symptoms include red blotchy and scaly skin, scarring, hair loss, bald patches, sensitivity of sunlight and, in some cases, damage to other tissues and organs. Like SLE, there is no cure; symptoms are managed through treatment and avoidance of direct sunlight to prevent the aggravation of symptoms.
There around over 100 drugs that can cause the body to provide an autoimmune response causing symptoms similar (but often not as severe) to SLE. Once the use of drugs is stopped, symptoms should decline within days, and disappear after one to two weeks (but make sure to ask your doctor before stopping medications!).
If you want to get involved and find out how you can help raise awareness, check out the Lupus UK website.