On this World Lupus Day, let’s take stock of this chronic autoimmune disease that mostly affects women and can sometimes take a long time to diagnose.
The term “lupus” means wolf in Latin and denotes one of the characteristic signs of this disease: a kind of erythematous mask resembling a wolf’s head forms on the skin of the face. It is often the first visible clinical manifestation of the disease mainly affects young women : nine women for one man aged 15 and 44, according to data from the Lupus Reference Center of the Pitié Salpêtrière University Hospital Group in Paris.
Rare, this disease is in fact rare since it affects about 30,000 people in France. While it primarily causes skin lesions, it can also affect joints and internal organs such as the kidneys. Therefore, early detection is important in order to be able to offer treatment that stabilizes this disease. But given these heterogeneous symptoms, diagnostic migration can take several years.
lupus what is it
Lupus is a autoimmune disease : This means that the immune defenses, which are normally only intended to fight external elements such as bacteria or viruses, “turn on” and attack the body’s cells. The body then produces harmful defense molecules called autoantibodies, which cause significant inflammatory reactions and lead to the self-destruction of certain tissues in the skin, joints, kidneys, etc. For this reason, the most common form of lupus is called “systemic”: the disease affects multiple organs.
How does the disease start?
“Several factors (environmental, hormonal and genetic) are likely involved,” according to the reference site for rare disease information, Orphanet. Additionally, “since lupus commonly affects women of childbearing age, there may be a link between lupus and female hormones.” It’s also likely that some people have genes that make them more likely to trigger the disease. A viral infection, stress, or sun exposure “can trigger, or rather “wake up” lupus through an as yet unknown mechanism.
How is lupus treated?
Lupus develops in phases: the disease is then active with various symptoms, then comes the remission phase, which can last from a few weeks to several months. To date, there is no treatment that can cure lupus, but several drug combinations can stabilize the disease. These combinations depend on each patient’s symptoms and development of lupus. Nonsteroidal anti-inflammatory drugs are prescribed for pain relief, but are usually insufficient. Among the most commonly prescribed drugs we can mention treatments based on corticosteroids, immunosuppressants or synthetic antimalarials such as hydroxychloroquine.
How do you live with lupus?
Once lupus has been diagnosed, medical surveillance is done to follow the evolution of the disease and adjust treatments. In everyday life, if you smoke, it is advisable to stop smoking, protect yourself well from the sun and do physical activity in the phases of remission. Talk to your doctor if you want to have children: In the case of lupus, the pregnancy must be planned. “It’s recommended that it only starts after 6 to 12 months of lupus remission,” explains the Medicare website. Barring periods of flare-ups, which are very stressful, and thanks to treatments, people with lupus can lead almost normal lives.
Note : According to the Lupus Reference Center, the disease is more likely to affect “certain ethnic subgroups, such as African Americans or Asians.”