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Hereditary angioedema, a rare disease that deforms the sufferer

 Mexico, .- For Alexis Aranda the television series “The Incredible Hulk” was the story of his life: a man who has to fight against uncontrollable crises that make his body grow, become deformed and tirelessly seeking a cure for it.

“It was like living like that man whose anger and pain caused his crises to be activated … it was me,” assures Efe, who is also a pianist and composer.

Aranda recalls that from her childhood she suffered a disorder that caused swelling in various parts of the body such as the face and hands, which for many years had no name or explanation. Today he knows that it is called hereditary angioedema.

Hereditary angioedema, which celebrates its International Day on May 16, is one of the 8,000 rare diseases that exist and is potentially dangerous to life, explains Dr. Sandra Nieto Martínez.

It is characterized by acute attacks of edema (swelling, inflammation), usually without itching, which occurs in different parts of the body, which becomes incapacitating to the sufferer.

However, when edema occurs in the larynx, it can cause death due to secondary asphyxia due to obstruction of the airways.
Because crises often go down while the person goes from home to the hospital, they are considered psychiatric patients “who invented their symptoms or who dads also do it”.

In addition, it is estimated that 1 in every 50,000 people in the world suffer from it, so it is estimated that there are 2,850 cases in Mexico, but there are only 315 patients diagnosed, of which 14 are children.
“My first crisis was when I was in the Boy Scouts,” he recalls.

Remember that being in an activity in the pool saw a bee and touched it. In doing so, it pricked his finger and became inflamed, which caused a huge edema, but at first it seemed normal and fruit only of the bite.

However, he says, as a result of that, similar incidents in feet and hands were repeated little by little.
His visits to allergists and all kinds of specialists were recurrent and he noticed that when he was in situations of high stress or anger, they became more acute.

The most evident symptom was the swelling in the abdomen, so the diagnoses were appendicitis, peritonitis, pancreatitis and others, but none was right so he began to distrust the doctors.

In this sense, the specialist points out that the delay in diagnosis represents another important challenge, since patients in Latin America can spend, on average, up to 22 years without being diagnosed.
This was the case of Alexis, who at age 20, says, traveled with whom he was his girlfriend to the Italian city of Padua, and there he had a couple of crises that took him to the hospital.

Being a city specialized in university medicine, he ran into a doctor who had the suspicion that his discomfort coincided with hereditary angioedema.

After some studies the diagnosis was confirmed and he began taking medications that helped him with the crises. But when he arrived in Mexico, he realized that the country did not have these drugs.

“The problem of patients in the country is just that, of the six drugs that are approved by the Food and Drug Administration (FDA) in the United States, we only have three in Mexico but they are only available in two. institutions, which also means a barrier for the sick, “says Dr. Nieto Martínez.

In addition to this, according to Dr. María Eugenia Vargas, head of the allergy and clinical immunology service at the hospital 20 de Noviembre, this is an expensive disease, which in countries like the United States can cost up to $ 44,600 per patient per month.

“It’s a frustrating disease, because unlike others you can not take care of yourself, you can not take precautions, you just get the crisis for no reason,” he says.

In addition, says Alexis, it is a condition that affects self-esteem “because it distorts you”, incapacitating up to 150 days a year and that, unfortunately, has no cure.

That is why Dr. Nieto Martinez calls to raise awareness to know more about this disease, because it ensures that, according to a survey conducted by the association that presides, 99.5% of doctors have no idea of ​​the disease.

“It is necessary to know, that empathy is generated for these patients, that an opportune diagnosis is achieved and that there is greater access to treatments by patients,” he said.

Finally, they called on the public to be alert to any symptoms and to be aware of their family history, since 75% of those who suffer from it have a family member with this disease. (EFE)

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