WHO WE ARE
NGO STORY
Lua Vermelha’s project was conceived by Dr. Marimilia Pita, pediatric hematologist at Hospital Samaritano de São Paulo, founder of the Pediatrics Committee of ABHH (Brazilian Association of Hematology, Hemotherapy and Cell Therapy), and specialist in St. Jude Children’s Research Hospital, Tennessee (USA). The objective of the NGO Lua Vermelha is to give greater visibility to sickle cell disease, increase general knowledge about the pathology and reduce people’s stigma with this clinical condition.
Why Lua Vermelha (Red Moon)?
Sickle cell disease affects the red blood cells, which are responsible for carrying oxygen to all cells in the body. In sickle cell patients, the red blood cells – which are normally rounded – acquire an elongated shape, resembling a sickle (hence the name sickle cell) and also a crescent shape like a half moon.
Lua Vermelha (Red Moon) was the name chosen for this project that seeks to give a more positive and less stigmatized view of sickle cell disease.
One of the characteristics of Sickle Cell Disease is the predominance in black people. As we will see later, the disease gene comes from the African continent. However, due to our intense miscegenation, despite the higher incidence and prevalence of the disease occurring in black individuals, it can also occur in individuals who are phenotypically (appearing) white, but who have the disease gene. Due to this social scenario, there is a certain mistaken tendency to classify it – and discriminate against it – as a “black disease”.
Dr. Marimilia Pita is a black doctor with a long career of success and dedication. In addition to all the professional credentials to lead Lua Vermelha (Red Moon) (the only disease association that has a doctor on its governing body), she adds the unique characteristic of having the perception of what it was like to build her path within a predominantly white and elitist.
“My history does not repeat the suffering of many trajectories of marginalized black people. My father was a doctor, I studied in the best private schools in São Paulo, but, in a way, I spent my whole life suffering segregation. I was the only black in kindergarten, at Colégio Bandeirantes, the only one taking a medical entrance exam, being the only black inside the college. Despite working in first-rate private hospitals in São Paulo, where I am a specialist in my field, to this day I perceive a discreet concern on the part of the family when I present myself as the doctor in charge, which is also a form of structural racism.”
/ BOARD
Dr. Marimilia Pita is the creator and founder of the Lua Vermelha (Red Moon) project. In her daily practice, in 35 years of exercising the role of pediatric hematologist, she has been following up countless cases of sickle cell patients.
In addition to understanding the disease more and more, she also realized that the lack of information of good technical quality negatively affects all patients and those around them. To give a warning signal, share her knowledge, reassure patients and their families, in addition to influencing governments and the medical profession itself, she created the Lua Vermelha (Red Moon)project.
In her career and life, Dr. Marimilia recognizes in herself an aggregating characteristic, which she brought to her experience in Lua Vermelha (Red Moon). Besides, of course, his own blackness.
Executive coordinator of Lua Vermelha (Red Moon), she has a degree in Law and is the mother of a person living with Sickle Cell Disease, who now has a degree in Law. She worked in social work supporting Sickle Cell Disease, was president of APROFE (an association that aims to contribute to the health of people living with sickle cell disease) and was vice president of FENAFAL (Federation of Associations of People with Sickle Cell Disease) from 2009/2011; today she is responsible for the Southeast region. Nowadays, she is the National Counselor for the Health of the Black Population.
General Secretary of the Red Moon. Photographer and mother of two patients living with sickle cell disease. One of them is already cured of the disease, after successfully undergoing Bone Marrow Transplantation.
Lua Vermelha has the support of Novartis Laboratory, which sponsors this site.
Based in Switzerland, the laboratory invests in a global work to raise awareness about sickle cell disease, as it is aware that the lack of information is one of the great challenges for patients with the disease. The difficulty of finding a doctor with experience in treating patients with this pathology can lead to late diagnosis, poor treatment and all its consequences.
After designing the project, Dr. Marimilia had the support of several health professionals, forming an important chain of supporters for the Lua Vermelha (Red Moon). Its team of collaborators is currently composed of a series of doctors who work in different areas of health:
