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 wolf in Latin… And particularly to the “wolf mask”, in reference to its cutaneous damage around the eyes, the nose and on the 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 from the skin aspect, they also hit the joints,”often painful and stiff in the morning”, with sometimes “damage to certain organs, such as the kidneys“or even 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 – concerns fatigue. Evolving in flare-ups, 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 quotes from the outset “the essential” adapted physical activity, psychological support and / or complementary therapies such as sophrology, hypnosis or meditation that can help the patient to carry his illness“. 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 raising, 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” supports Marianne Rivière, president of the French Association of Lupus and other autoimmune diseases (AFL+). especially since the latter “are not always understood, in particular by their family or professional entourage. What often constitutes an additional sufferingTo learn more about the AFL+, visit: https://lupusplus.com.