2023-09-22 14:24:52
While Drepaction takes place this weekend, the Drepacare application wants to help sickle cell patients in their daily lives. Created in 2017 by three friends, including Laetitia Defoi from Martinique, it allows patients, their loved ones and caregivers to discuss a still little-known disease.
Samuel Piqueur • Published on September 22, 2023 at 4:24 p.m., updated on September 22, 2023 at 4:25 p.m.
Sickle cell anemia is a genetic disease, a blood disorder, which affects between 20,000 and 33,000 people throughout France and globally 50 million people are affected. However, it remains a pathology relatively little known to the general public. This is how Laetitia Defoi, with the help of two friends (Anouchka and Meryem), decided to create an application to help its democratization: Drepacare.
This digital tool was created in 2017 at university. In the master’s degree in public health at the Paris 13 faculty, which the three friends are taking, courses to learn how to create tools to improve the quality of life of people suffering from different pathologies were given. Diabetes came up quite often in the debates and in their research, but never sickle cell disease. “We found that there was no no application on which one might note the pain, she admits. We then said to ourselves that in the digital age, our action had to be broad and complementary to existing associations. […] We then began to focus on groups of other patients and healthcare professionals, and there, our application was born.”.
The Drepacare application is a free downloadable mobile tool that is intended to be accessible to all. “Our application is preventive, informative and offers personalized monitoring. Above all, we take social issues into account, because it is an illness that is extremely isolating, confides Laetitia Defoi. In this tool, there is a forum, where sickle cell patients can discuss various subjects with each other, they can do so anonymously if they wish.”
Several other features are possible. Users can note their treatments, their pain, they can also find a digital card to use when they go to the emergency room. Other resources are also accessible, this time more informative, such as articles on sickle cell anemia, testimonials or even guides. “The application is never finished, because we work with the patients. We try to improve it all the time, our goal is to offer them a better quality of life“, declares the Martinican.
The application offers personalized monitoring to users • ©Laetitia Defoi
Funded among others by the Île-de-France region, the disability foundation and various other associations, Drepacare is enjoying some success. Today, it has nearly 5,000 users throughout France, including overseas departments and territories, but also in Africa. The “forum” part is particularly appreciated. It allows users to connect and discuss their daily lives and their relationship with illness across the world; they can also ask each other questions and help each other. “There are things that we experience in common, like crises or even the school environment. We can also ask how the care pathway works in this or that country. […] This is the feature that works best“, said Joy.
But the application is not only intended for sickle cell patients. It also aims to provide answers to the families of people suffering from this pathology, but also to health personnel. “We have a lot of health professionals who download the application, notes Laëtitia. In the guide tab there is information for them. […] Because very often they are professionals, who find themselves in regions where there is no specialist in this disease and who want to know more.“
Last June, on the occasion of World Sickle Cell Day, a white paper on the disease was presented to the Minister of Territorial Organization and Health Professions, Agnès Firmin Le Bodo. In the latter, the co-authors put forward several avenues to improve the daily lives of people affected, including the implementation of generalized training on sickle cell disease for all health personnel.
On all fronts, Laetitia Defoi, a professional nurse, also uses social networks to make this disease easier for as many people as possible to understand. On this day of drepaction, the Martinique woman has one last message to convey: “donate blood because it is very important for people with this disease.”
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