Lupus, the Unseen
Lupus, the Unseen
Paqui usually stays at home. The fatigue and constant pain in most of her body prevent her from doing the everyday tasks. She barely sleeps for more than five hours. After the brief hours of rest, Paqui wakes up on the couch. The next step: prepare a good coffee for her son Brian, 22, at five or six o'clock in the morning. Back in the sofa, she lightens up her first cigarette of the day.
"Today, I still do not understand what Lupus is. Neither I understand nor accept it. I will always remember the moment when the doctor told me I had Lupus. I would not wish that moment to anyone. When they said I had Lupus it was as if I had been told I had cancer". Francisca (Paqui) Montiel, a 44 years old woman who lives in Vic, Spain, evokes, ten years later, the moment when she discovered she would have to live with a disease forever.
The SLE (Systemic Lupus Erythematosus or Lupus) is an autoimmune, chronic, degenerative and sometimes mortal disease. The immune system is responsible for protecting the body from harmful elements, but with this disease it also attacks the healthy ones. In doing so, various cells, tissues or organs in the body suffer injuries that can be very serious.
The Systemic Lupus Erythematosus (SLE), unlike the Erythematosus Discoid, which only affects the skin, also attacks several systems and vital organs like the brain, lungs or kidneys . Whenever Paqui attends a medical checkup, she asks herself: "What else will I have today?". Over the years, and as a result of her illness, Paqui has symptoms that have emerged gradually. Among others, she has epilepsy, Arnold-Chiari malformation, fibromyalgia, thrombophlebitis, inflammation, depression, hair loss, mouth ulcers and severe fatigue.
Although Lupus is a disease highly associated with hormones and 90% of the patients worldwide are women, pregnancy is not the only cause of the "awakening" of the disease. Many studies are gradually finding answers, although there is still no explanation for the appearance of Lupus. However, it has been possible to find common causes of the chronic illness, such as infections, stress, intake of estrogen, antibiotics or certain drugs, and exposure to ultraviolet (UV) radiation.
Because of the complexity of the causes and consequences of the disease, there is no specific medication yet, or at least not one economically affordable. It is for this reason that patients take several medicines focused on other diseases: antimalarials, immunosuppressants, corticosteroids, anti-inflammatories, antidepressants or anticoagulants.
After her first cigarette, it is time for Paqui to take the first of the three doses of morphine of the day; 2.5 milligrams of this drug that helps her to cope with the intense pains.
Paqui has a 68% Degree of Disability. Based on this number, she receives a pension of no more than 360 euros per month.