World Lupus Day: how is the fight against this disease that still has no cure

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At first he did not know what he had: his arms and legs were falling asleep. He decided to go to the doctor to get a checkup. They began to make a series of studies and analyzes. Until then, she was calm. “I thought they were cramps due to lack of potassium, but the days, studies, analyzes and everything went wrong, there was nothing that was within normal values ​​and they continued to investigate,” she told LA NACION Genoveva, a woman at the He was diagnosed with lupus when he was 30 years old.

Today is World Lupus Day. It is an autoimmune and chronic disease that affects between 40 and 100 of every 100,000 people, mainly women between 15 and 44 years old.

“One day they told me that in three months I had to repeat the tests,” said Genoveva, “that time passed, all the bones hurt, I lost strength and movement in my joints, and confirmation came: I had systemic lupus erythematosus.” He added: “There, they referred me to a specialist (rheumatologist), but at that moment I did not become conscious.” The days went by and I went to see the specialist doctor who, over time, became my savior.

The most common symptoms are fatigue, fever, muscle and joint pain, rashes and hair loss.

Technology was not the ally of this young communicator at that time: “Before going to the doctor I made the goofy stupidity and it was the worst.” Words like “there is no cure, it is treated with chemotherapy-like applications, no there are many cases in the world, the causes are not known, the only thing that can trigger it is a very big stress, the patient may need dialysis “and more I thought that I was going to die and with that feeling I went to see the specialist. He reassured me and told me three fundamental things: “This is step by step, not everyone works with the same medication and the day you want to have a child we have to program it.”

The symptoms

Lupus is not a contagious disease, nor transmitted by sexual contact, and the causes that generate it are unknown, although genetic, hormonal and environmental factors could be related. The damage that can cause in the organs and tissues are irreversible and some patients die prematurely.

Although the signs are not clear, you can point out some symptoms, before which you have to resort to a doctor:

  • Permanent fatigue
  • Anemia and weakness
  • Pain in the joints (sometimes with swelling) and muscles. Fatigue.
  • Skin rashes of different types that predominate in areas exposed to the sun
  • Recurrent fever without evidence of associated infection or other cause that explains it
  • In severe cases, compromise of internal organs, such as the kidney, with patients who end up on dialysis.
  • Skin lesions
  • Ulcers or erosions in mucous membranes (for example in the oral cavity)

“What the science says is that it is a systemic and chronic rheumatic pathology, that is, it can affect any organ or system: A joints and muscles, can damage the skin, kidney, lung and almost all organs. That is the theoretical definition, “said Genoveva. “In practice, I can say that it is a frightening disease, very difficult to carry, that it always gets complicated with something, that you live with pain, that it goes off for any side, that it has no cure and that being autoimmune is different in each patient “he added about his experience with lupus.

13 years of struggle and surprises

“In these 13 years all the complications that I could have had, it happened to me, I tried all the medications because in this type of diseases there is no recipe to help you take it. trusted doctor, that helps carry the disease and saves you, “he said.

“It is a daily struggle, difficult to carry but with which you can live, you just need a good doctor, learn to fight with fears, boredom and ghosts,” summarizes this independent professional woman.

“Luckily, today we are talking about lupus, it is not enough, it is still unknown, we have to put the desire, the body and find a savior like I found my doctor”, concluded Genoveva.

The work of the Asociación Lupus Argentina (ALUA)

In a dialogue with LA NACIÓN, Teresa Cattoni, president of (ALUA), “The number of patients who have Lupus in Argentina is not clear, they are extrapolated data, because serious epidemiological studies have not been carried out here. it affects the population, of which 90% are women of childbearing age, and it also affects men, children and the elderly. ”

“The life of a patient with lupus is quite hard, there are no two cases, lupus goes from the most benign to the most severe because it has periods of crisis, outbreaks, where everything becomes much more difficult. where it quiets down and the symptoms disappear, and this can last for many years, “he explained about the disease process.

Cattoni said that “the biggest challenge in the future is to achieve the cure of lupus, and that there is greater public awareness about the disease, because according to surveys conducted last year there is a fairly low awareness and misconceptions that persist.”

“One very worrying thing is that there was a high percentage that thought that Lupus was contagious because it is autoimmune, that is, they compare it with HIV and they have nothing to do.” Lupus is not contagious, that is one of the erroneous myths that They bring situations of discrimination at a social level, “explained the specialist.

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