During October, there is a push among patient advocacy groups, people living with lupus and their families, and medical professionals to raise the profile of lupus by asking for increased funding for research as well as resources for support and services throughout the country. Social media campaigns, organised public events, newspaper and print ads, and letters to the government all help shed light on the fact that although lupus affects an estimated 50,000 people in the UK to date, the disease is complex to diagnose and a challenge for those living with it. Understanding what lupus is, the various types of the disease, who’s at risk, and what can be done about improving diagnosis is necessary in the fight against lupus during October and throughout the remainder of the year.
Defining Lupus
Broadly speaking, lupus is an autoimmune disease that wreaks havoc on an individual’s healthy tissues within the body, thanks in part to an overactive immune system. For patients with lupus, the immune system that normally works to fight off foreign invaders through the production of antibodies instead creates antibodies that destroy most tissues, leaving any part of the body at risk. Lupus often leaves individuals in constant pain and managing inflammation affecting various organs, skin, joints, or muscles. The disease has a flare-up characteristic, meaning symptoms can come and go over time.
Two main types of lupus exist: Discoid lupus erythematosus (DLE) and Systemic lupus erythematosus (SLE). With DLE, individuals mainly experience symptoms related to the skin, not internal organs. DLE may produce skin lesions that lead to scars after healing, especially when skin is exposed to sunlight. With SLE, individuals experience more serious symptoms, both impacting the skin and vital organs. Some patients with SLE have raised, scaly rashes across their nose and cheeks, or a noticeable and irritating rash on other parts of the body, and the condition has the potential to inflame and ultimately damage the tissues connecting the joints, muscles, and skin. Individuals with SLE also experience kidney disease, seizures, depression, and stroke in the most severe cases.
Although there are multiple types of lupus, there are common symptoms that arise when the disease starts to take hold of an individual’s immune system. Sun sensitivity, weight loss, and poor circulation are common, as are intense fatigue, an ongoing fever, and severe joint or body pain. Sores on the nose, mouth or throat may also appear in lupus patients, as well as enlarged lymph nodes, bald patches, or a skin rash. In less common cases, lupus may bring on confusion, anemia, headaches or dizziness. Any of these symptoms alone or in combination with one another should prompt a visit to the doctor immediately.
Who is at Risk?
Anyone can develop lupus, but the chances are higher for the following groups of individuals:
- Women
- Of African descent
- Between the ages of 15 and 45
- Have a family history of lupus
- Take medications related to drug-induced systemic lupus
Once lupus has been diagnosed, the probability of having an episode of symptoms can be increased by participating in several different activities. Some individuals who spend a great deal of time exposed to direct sunlight are more likely to have a flare-up of symptoms, as are those who smoke. Some prescription medications also cause lupus symptoms to worsen, as do infections like hepatitis C.
The Dangers of Misdiagnosis
One of the reasons lupus deserves an awareness month each year is because of the complexity that is inherent to diagnosing the disease. Lupus does not have a singular cause or a singular symptom that makes it easy for medical professionals to pinpoint it as an underlying problem for patients. In fact, getting a correct diagnosis of lupus can take years, because symptoms can masquerade as other illnesses.
A specialist from a medical negligence firm shared that several claims related to lupus are brought to them each year. Because warning signs are not disease-specific, misdiagnosis is more common patients, their families, and members of the medical profession would like. Lyme disease, chronic fatigue syndrome, and fibromyalgia are all characterized by similar symptoms as lupus, making it difficult to get a correct diagnosis, and ultimately, the right treatment, early on. When misdiagnosis takes place, individuals and their families are left feeling like there is no way to battle the painful, debilitating symptoms of the complex and persistent condition.
Seeking the Right Help
Although getting a diagnosis for lupus can be a challenge, people are encouraged to seek out medical attention as soon as symptoms arise. When problems are unexplained, like a skin rash or ongoing fatigue, it is important to speak with a GP quickly so that further testing can be done to uncover whether lupus is a factor or another condition is the culprit. In some cases, the gradual increase in the number and severity of symptoms over the course of weeks, months, or years, means individuals delay making an appointment, but this often prolongs a diagnosis that could offer relief from discomfort as well as peace of mind for the patient.
For those who have been diagnosed with lupus or have a family member living with the condition, there are several resources available. Visiting a site like LupusUK can be beneficial in learning more about the disease, how symptoms can be managed, and specific questions to ask the doctor at each visit. Living with lupus can be a complex and challenging struggle, but having the right information and the right support from the start eases these concerns immensely.
