What is ankylosing spondylitis, the disease that singer Louane revealed she suffers from?

"I'm in pain all the time." Singer Louane revealed in photographer Alice Moitié's Alice Underground podcast that she suffers from ankylosing spondylitis , a little-known condition.

This term is less commonly used today in favor of spondyloarthritis, which allows for the inclusion of more forms of the disease. Delphine Lafarge, president of the French Spondyloarthritis Association (AFS), has noted a renewed interest in this disease in recent days.

"There was no showbiz personality identified until now. It's important to be able to give more visibility to this invisible, debilitating, even handicapping illness, which causes enormous suffering for many people," she told BFMTV.

It is a disease that affects the spine and joints. The French National Institute of Health and Medical Research (Inserm) describes spondyloarthritis as a chronic inflammatory rheumatism. It primarily affects the lumbar region and pelvis. It can also affect other joints in the body or manifest as psoriasis.

"They can be severe and disabling, as they progressively destroy the integrity of the joints and promote ossification of the spine," the Institute wrote in a report published in 2023.

They often occur in young adults between the ages of 16 and 30 and affect 150,000 to 200,000 people in France, nearly half of whom suffer from severe forms, adds Inserm.

Spondyloarthritis is an autoimmune disease. Researchers have observed that cells in the patient's immune system react abnormally by secreting inflammatory molecules, leading to the progressive deterioration of the joint.

"The origin of the phenomenon remains unknown. According to the currently favored hypothesis, it would be triggered in response to factors secreted by the intestinal microbiota," specifies Inserm. Environmental factors, such as tobacco, may also be involved.

Genetic factors allow us to say that hereditary factors are at work.

"The epidemiology of these diseases shows a strong familial aggregation of cases, a finding which has made it possible to highlight a genetic predisposition," the Institute specifies.

The French Spondyloarthritis Association, which has been supporting patients with this disease for 25 years, explains that "the disease is often diagnosed too late."

"Early diagnosis is a long and difficult process. Radiological signs of joint damage are not always visible at the onset of the disease, but certain blood tests can provide useful information," the association states on its website.

Inserm specifies that there are no truly discriminating tests and notes diagnostic errors which lead rheumatologists to confuse this pathology with other chronic pain of the spine, such as fibromyalgia .

Biological tests and imaging studies improve the identification of symptoms of the disease, which manifests itself through pain, joint swelling, but also extra-articular disorders such as inflammation of the urinary system or the eye.

Delphine Lafarge laments that rheumatology research into this disease has been limited. "Spondyloarthritis has long been the poor relation of research, which has focused heavily on polyarthritis. Thanks to research, we could have even more options to limit the disease."

With early treatment, the disease and its symptoms can be more manageable for the patient. Treatment options are available to limit inflammation and preserve joints.

Louane, who said in her interview, "[being] careful about what I eat so that it's not too inflammatory and I do a lot of Pilates," applies advice given by rheumatologists.

Indeed, physical activity is highly recommended because it helps control the disease. Rest, on the other hand, would exacerbate the disorders.

"Twenty years ago, when you had an attack, you were advised to stay in bed for sometimes several months. This is the opposite of what is recommended today, which shows the progress that has been made," notes the president of the French Spondyloarthritis Association.

Physical therapy and even surgery are used. Nonsteroidal anti-inflammatory drugs are often prescribed as first-line treatment. Their side effects are sometimes difficult to cope with. There are other drug treatments and biotherapies available when "first-line" treatments are not satisfactory.