It is a taboo disease. It is on the skin, but hardly see. Many people suffer as psoriasis and melanoma. It is confused with other diseases, such as severe acne. Patients take an average of eight years to receive an accurate diagnosis . Meanwhile, suffering excruciating pain, they are isolated, they lose their social life and can fall into a deep depression.They hide their disease and they are hidden. But timidly, those who suffer from hidradenitis suppurativa (HS) begin to overcome embarrassment and talk. As happened a few years ago with psoriasis, hidden and stigmatizing disease begins to come to light.
Gabriel Garcia Marquez’s he suffered and made her suffer Colonel Aureliano Buendia. Far from fiction, at the last congress of the European Academy of Dermatology in Denmark HS Voices, a global initiative that aims precisely to give voice to patients as Gabo was launched.
This disease is generated by an immune system problem. It is characterized by the appearance of boils or abscesses usually repeated in intimate parts: armpits, breasts, genitals, perianal area. As it progresses, it causes serious skin lesions. And triggers the “emotional effect”, the great burden of hidradenitis: patients are isolated, limit their sexual and social life, many come to lose their jobs and are at increased risk for anxiety disorders and depression. In Argentina, it is estimated that at least 400 thousand people suffer from it .
“No matter how strong you are, the disease impacts everything in your life. I lived in silence and shame for years, “says Brian Bourque, a Canadian who became ambassador to the HS. The Patients Association Danish Hidradenitis just launched another campaign in social networks: the style of “ice bucket challenge” #DonateAShh asking people to upload a selfie with his index finger in front of lips, as for silence, just to break the silence surrounding the disease.
One of the biggest problems in combating HS is the delay in diagnosis.”Missing in training clinicians to refer patients,” warns dermatologist Spanish Antonio Martorell Calatayud, head of the HS Valencia Manises hospital, the only one in a health center in Spain. It also recognizes, there may be subsequent failures dermatologists in accurate diagnosis.
The disease affects more women than men and usually occurs around age 21 and decline to 50. It is caused by an inflammation of the sweat glands. “This causes blockage of the hair follicles and there begins the formation of lesions which are very painful. Open to theoutside draining a liquid stain and keeps wet clothes permanently and generates a very unpleasant smell , “explains Alberto Lavieri, Pirovano Hospital dermatologist and one of the leaders in Argentina.
So far, the disease is treated with antibiotics, painkillers and surgery. At the congress of the EADV is just introduced a new biological therapy, adalimumab, a drug developed by Abbvie that had been used in psoriasis and drug agencies in Europe and US also they approved for hidradenitis.
With early diagnosis and appropriate therapy, you can learn to live with the HS. He says the Italian Giusi Pintori, who leads the group of patients with HS in their country and who want to help their Argentine counterparts to organize: “Support among patients makes the difference. The disease is an aspect of my life. But I also think it’s an opportunity to be better. ”
The “footloose” Gabo”He found Aurelinao Colonel Buendia’s room pillory, lying on a cot with open arms, because he had cobbled golondrinos armpits.” With his masterful prose, Gabriel García Márquez described in this line of “One Hundred Years of Solitude” disease he suffered his legendary character, but actually suffered himself: golondrinos is a way to call boils that characterize hidradenitis suppurativa .Eligio, brother of writer died in 2014, told him in the book “After the keys to Melquiades” (2001), which described the creative process of the novel. Gabo made several tratamienots without results, for five years. Until he “transferred” his evil to one of his characters and then transmitted disease. As if magic realism.
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