Help us expand DrepaComunidade — a digital platform about sickle cell disease — and support patient associations in Portuguese-speaking countries. Information saves lives. Together, we can go further!
DrepaCommunity – Knowledge to Care. To share knowledge and experiences about Sickle Cell Anemia (Sickle Cell Disease) in Portuguese.
DrepaComunidade is a project by APPDH, the Portuguese Association of Parents and Patients with Hemoglobinopathies, created to bring together patients with Drepanocytosis from the entire Portuguese-speaking community.
Sickle cell anemia is a hereditary disease in which red blood cells become sickle-shaped and burst easily. This is why it is also known as sickle cell anemia. These “sickles” clog the blood vessels and cause painful crises of excruciating intensity that, if left unchecked, can lead to stroke and death.
Bruno, 3 years old, when he has a pain attack says that he is being stabbed with sharp knives all over his body. It has been proven that emotional support is essential to reduce the amount and intensity of these pains.
In Africa, around 1,000 children are born every day and, without adequate medical support, half of these children will die before the age of five.
Despite being a very serious disease, it is unknown and neglected , even in the most developed countries. In Portugal , there is no official record of the number of patients.
In Africa, there is no capacity for diagnosis or treatment, especially in Portuguese-speaking countries. Patients often come to Portugal to be treated or to live.
We can tell you the story of Maria, or Joel, who left their families and came to Portugal because they had a “bone disease”.
“I never understood why I had left my mother and my brothers. When I was in pain I was alone, I didn’t know any other children like me.”
We want to contribute to creating living conditions in their countries, without the need for them to travel.
To provide answers to all those who suffer from sickle cell disease, DrepaComunidade was created. A community that aims to talk about sickle cell disease with all those who live with it and speak Portuguese.
Our goals:
1 - Promote an online platform for sharing information.
2 - Create sharing groups for emotional support, with psychological support.
3 - Provide support to new parents whose children have been diagnosed with the "heel prick test", with the delivery of a "baby kit" containing information about the disease and the Drepa community.
4 - Disseminate information in hospitals and schools to end the discrimination and stigma that children with sickle cell disease suffer due to lack of knowledge on the part of teachers and classmates.
We want to improve the quality of life of these patients!
In what way?
Greater visibility, communication networks between patients, providing emotional support and updated information to patients and their families.
To carry out this project, we already have several associations of patients with Drepanocytosis in the CPLP countries (Community of Portuguese Speaking Countries).
We want Bruno, Marta, Luísa, Paulo, Maria, Joel and so many others to feel like an integral part of the community and not suffer any more due to a lack of knowledge about this disease.
Support DrepaComunidade. With your contribution we will change the lives of these patients.
This is how we can make a difference:
Reduction of painful crises (quantity and intensity) with more information and emotional support.
Building bridges between healthcare professionals, patients and caregivers for a better approach and understanding of the disease.
Greater visibility and awareness of Drepanocytosis to end discrimination.
