Young man with rare disease in DF makes a crowdfunding to save his own life

Since the age of 8, the family of young Yasmin Alves (now 22) has been looking for answers to the severe symptoms presented since childhood. However, just two months ago, her father, Everton João Alves, 49, arrived at a diagnosis: it is acute intermittent porphyria, a rare disease that causes organ failure until death.

A resident of Sobradinho, the brasiliense is hospitalized at the Asa Norte Regional Hospital (Hran) to contain the severe pain caused by the oxygen deficit in the bloodstream, the main factor in the disease. For some time, not even morphine has been able to minimize the discomfort, and the patient, according to her father, has needed to be sedated so as not to go through the daily suffering.

“She lives 24 hours under the influence of morphine, which is no longer able to hold back the pain and the level of use is at its maximum, which worries the doctors. Yasmin can no longer walk, her kidneys are compromised and so is her bladder. Doctors are already worried about the lungs and the heart, and we are running out of time,” said Everton to metropolises.

According to Yasmin’s father, the only recognized treatment for the disease is with hematin, which is very expensive and is not immediately available in the Unified Health System (SUS). With a low income (Éverton is a craftsman and serigrapher, and his mother is a seamstress), the family decided to ask for help to go to court and get the medicine.


The responsible magistrate collected a series of documents and medical reports before granting or not the request. However, the patient’s condition has worsened in recent days, and the family is racing against time to get the seven ampoules prescribed by the specialists. Each of them costs about R$ 35 thousand.

A crowdfunding is being carried out on the internet, but so far, the family has managed to raise only R$ 7,200 of the R$ 300,000 needed for treatment in the most acute phase of the disease.

According to the father, hematin can reverse the severity of the case and, administering the drug in the most acute moments, the condition can be reversed. Currently, Yasmin can no longer walk.

“Hematin already belongs to our body, it has a defect in the creation of hemoglobin, so, without hematin, it causes extreme pain in the limbs and can lead to seizures”, added Éverton.

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About Jenni Smith

She's our PC girl, so anything is up to her. She is also responsible for the videos of Play Crazy Game, as well as giving a leg in the news.

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