You can’t see it, smell it or even taste it, but 5 million people all over the wold can feel it and suffer with it. Autoimmune diseases are a serious matter that deserves the maximum of attention. Those sort of illness happens when the immune system starts attacking and destroying healthy tissues of the body – it is literally the body turning against itself.
Although there are some theories regarding genetics and some medications, the reason why people have it is still unknown. Lately, studies have shown that it may be caused by hormonal, environmental and infectious factors, but there is no certainty surrounding any aspects of this body reaction.
The list of autoimmune diseases is enormous but Lupus, nowadays, has the higher ratings of people with it. It presents four types of ill: the most frequent kind of Lupus on the medical charts is systemic and consists on the inflammation of the inner organs, damaging several of them and the body’s systems. But there is another that damages specifically the skin, which is identified through rashes on the surface usually of face, neck and scalp. It can also be transmitted during the pregnancy and the child is born with rashes or kidney failure. Last but definitely not least, the disease can be induced by drugs and medications, however the symptoms are temporary and interrupted when the practice is shut down.
The symptoms are very characteristic – fatigue, fever, joint pain, shortness of breath, chest pain, headache, mental confusion, hair loss and rashes. Although the way the disease manifests itself has been already categorized, doctors still have some trouble when diagnosing a patient, once there are specific exams, but they’re not enough for diagnosing someone. Only the combination of various blood and urine tests, and mainly a clinical analysis, can lead the way in a medical investigation.
Sadly, scientists still have not found the cure but they have found treatments to ease symptoms and improve life quality. It can be treated with medications such as sunscreen for the skin rashes, anti-inflammatory for the artrites, corticosteroids for the cutaneous rashes and anti-malarial drugs. What makes the treatment harder is that each kind of Lupus has its own specific treatment and the person’s biological characteristics makes it even more particular.
Nowadays, people are more open to the idea of getting psychological aid and that is not different for people with autoimmune diseases. Sônia Cardoso, a brazilian psychologist, tells that a patient with an illness without a cure should receive the same care as any other patient and be constantly reminded that they are more than the disease. “There is still a person with a background and a story, those things does not go away when a diagnosis is made”. Cardoso also states that is common for people to arrive at a session feeling depressed and anxious, which is why “I try to stimulate the point of view in which they can recognize themselves for who they are and not for what they have”.
It is not a discriminatory disease, anyone can have it. It doesn’t matter if you are man or women, black or white, tall or short, famous or not. Lupus became especially well known after the celebrities Lady Gaga and Selena Gomez went publicly talking about their struggle with the disease. “I’ve been extremely selfish”, tells the former Disney star regarding the way she tried to ignore her condition. She also stated that while she denied having lupus, she took her body up to a point in which ignoring was not an option anymore.
Image Source: Instagram / @ladygaga
The 18 years old student, Ana Clara Pinheiro Nóbrega, claims not to deal well with lupus. Diagnosed only 8 months ago, Ana goes through an absurd amount of pain that stops her from doing things she used to enjoy, such as sports. “Nobody understand the pain and it doesn’t go away with any medication”. With help, love and support from her family and boyfriend, she gets annoyed and dismayed towards the judgment diagnosed people get. She tells society is lacking with empathy: “it is hard no to feel down and stressed with something that is killing you little by little”. But things are not just cold and rainy, “it’s amazing how a being this small can bring so much light and positive energy” says a very emotional Ana about her dog and companion called Panqueca.
Lupus is a terrible frail disease that requires a wild change in routine and habits, while having the knowledge that there is still no cure. However, people can live a good life despite the adjustments. An important part is to have a space to talk and not be discriminated or be undermined. The pain is already there and the last thing needed is someone saying to stop using lupus as an excuse and to not let it get into life.
Lupus does not have an organized prior filter to deicide who is going to have it. Anyone can be diagnosed with the illness and each one has or would have their own way of dealing with it. Respect and empathy are not only for instagram captures and inspiring stories and, so says Ana, “Try to understand and have a little bit of empathy, not pity, no one needs that”.