ISSN 2141-1093
relatively young at 48, Kahlil Gibran, the Lebanese-born poet, writer and artist remains the third best- selling poet of all time (after Shakespeare and Lao Tzu). ABRADFAL, the Brazilian Association of People With Sickle Cell Disease has adopted a quote from Gibran to underscore the value of hope as opposed to despair.
'Gibran says, ‘indifference half of Death.’ Nearly seven years ago, the words of Gibran found prophetic fulfillment in the life of Elvis Silva Magalhães, 45, ABRADFAL's President. Despite the punishing ordeal with sickle cell anaemia as a child and as a young adult, Magalhães never gave up hope (desire) that, as the pidgin jargon goes, 'one day he go better'. ‘A Difficult Life’ Born in 1967, Magalhães got little respite from sickle cell. Pain, frequent hospitalization and blood transfusion coloured his whole existence. As he grew older, other complications set in: ankle ulcers, pneumonia, liver problems, other issues with his blood and priapism. He had surgery to remove his gallbladder. He was on hydroxyurea, the medication known to improve the health of people with sickle cell partly by raising the fetal haemoglobin (HbF) levels. After many blood transfusions, his body became overloaded with iron, making life even more difficult. In a society where sickle cell is not as rampant as it would be in, say, in any big West Africa city, it was doubly tough for a white boy to grow up with this condition in the midst of 'normals'. At school and later at work, the condition posed an intractable challenge. Bone Marrow Transplant When Magalhães was growing up in the 1970s and '80s, the miracle procedure for curing blood disorders called Bone Marrow Transplant was in its infancy. Considered much too risky for anyone above the age of 16, it was applied only in cases of severe illness. Even then the illness must not be severe enough to guarantee failure from the start. Thus the specialist team had to thread a fine, fine line before approving a patient for the procedure. Magalhães was 38 years old when he went in for the drastic regime. His elder brother had been found a perfect HLA match to donate bone marrow. The transplant team, headed by Drs. Julio Cesar Voltarelli and Belinda Simões at the Faculty of Medicine, University Hospital, Ribeirao Preto, Sao Paulo, was waiting for the final green light from the patient and his family. Magalhães was torn between the desire for a new lease on life and the apprehension that the procedure could fail. 'I debated within myself whether to go ahead with the transplant,' he says, 'and I argued with the doctors that, considering my age and all I had undergone with sickle cell, my health may not be good enough to withstand the transplant.’ But,, true to Gibran, ‘desire’ defeated despair and Magalhães submitted himself for the transplant 18th April 2005. He was 38, an old, old man as far as eligibility for the procedure was concerned. Instant Fame 'Luckily for me,' Magalhães recalls, 'the procedure was a 100% success - my haemoglobin genotype changed to AS!’ Only one of the 14 individuals to be cured of sickle cell in Brazil, his genotype changed to that of his benefactor, his elder brother. Overnight, he became a celebrity. It was unheard of for a full-grown man to be cured of an inherited disease. The toast of the news-media, Magalhães appeared on television, had several rounds of radio interviews and was invited to parley with top government technocrats. He went on a tour of the country, sharing his experiences. Two years ago, Magalhães became president of ABRADFAL, an umbrella organization affiliated to FENAFAL, Brazil's national sickle cell association. Rid of the big and niggling itches of poor health, Magalhães is determined to fight for a better deal, in all its ramifications, for people with the bloody inheritance from which he is now liberated. READ MORE 
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Elvis Silva Magalhães, right, was cured of sickle cell at the age of 38.
His elder brother donated the bone marrow that cured him
His elder brother donated the bone marrow that cured him
| C U R E D A T 38! by Tosin Fawemida |
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| ‘I argued with the doctors that ... my health may not be good enough to withstand the transplant.’ |
| In a society where sickle cell is not as rampant as it would be in, say, in any big West Africa city, it was doubly tough for a white boy to grow up with this condition in the midst of 'normals'. |
| On April 18 2005, Elvis Silva Magalhães underwent a bone marrow transplantation procedure, which cured him of sickle cell. He was one of 14 persons to be so cured in Brazil, and, at his age, the oldest adult in the world to be freed of the sickle! |
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