Lupus: a grueling female disease - In the spotlight

2023-05-09 14:54:13

09 May 2023

This May 10 will be marked by World Lupus Day. This chronic autoimmune disease affects women in 90% of cases and is characterized by a great variability of symptoms, including extreme fatigue. Uncontrolled, lupus affects the whole body and has a considerable impact on the quality of life. The explanations of Pr Eric Hachulla of the University Hospital of Lille (North).

Its name refers to loup in Latin… And particularly the “wolf mask”, in reference to its skin damage around the eyes, nose and cheekbones. ” It is one of the manifestations of this autoimmune disease, that is to say caused by a reaction of the patient’s antibodies against himself », Reports Pr Eric Hachulla (CHU Lille), coordinator at the national level, of the Health sector of rare Auto-Immune and Auto-Inflammatory diseases (FAI²R). But the symptoms of lupus are very variable and heterogeneous. Beyond the skin aspect, they also hit the joints, ” often painful and stiff in the morning”, sometimes with “damage to certain organs, such as the kidneys or the lungs, with difficulty in breathing.

Potentially dramatic consequences

But, continues the doctor, like the chronic diseases of which lupus is a part, which is also one of the most frequent ‘rare’ diseases (about 30,000 cases in France) – “the major complaint of patients – patients in nine out of ten cases – relates to fatigue. Evolving in spurts, it constitutes a real burden to manage on a daily basis”. So heavy and impacting “at the family, social and professional levels that it can cause anxiety or even depression”. Potentially dramatic consequences therefore, all the more so if the disease is not controlled by appropriate care. ” And overall », hastens to specify Professor Hachulla who immediately quotes « the essential » adapted physical activity, psychological support and/or complementary therapies such as sophrology, hypnosis or meditation which can help the patient to carry his disease “. The therapeutic management of lupus has recently evolved with the arrival of biotherapies.

An often misunderstood disease

Finally, the doctor insists on therapeutic education programs to support patients, particularly in understanding this disease, which is specific due to the multiplicity of its symptoms and its repercussions. Awareness, information, psychosocial support… “ We are very attached to these aspects which aim to better understand the disease in order to ultimately improve the quality of life of patients,” says Marianne Rivière, president of the French Association for Lupus and other autoimmune diseases (AFL+). Especially since the latter “are not always understood, especially by their family or professional entourage. What often constitutes an additional suffering “. To find out more about the AFL+, go to:

Source : Interview with Pr Éric Hachulla on April 21, 2023 – Interview with Marianne Rivière, April 20, 2023
Written by : David Picot – Edited by: Emmanuel Ducreuzet