It is also an opportunity to take stock of new therapies and advances in the management of patients with this disease, which is still too little known to the general public.
To hear Jenny Hippocrate, the project manager of this operation organized by her association APIPD (association for the information and prevention of sickle cell disease), this 6th edition of the charity gala promises to be a success with already more of 2,000 people expected. “An incredible enthusiasm”, delights the one who has made the fight against sickle cell disease the fight of her life. A prestigious evening where a large number of personalities representing the world of fashion, politics, sport and culture will be present and during which the new sponsor of the association from the sports world will also be presented.

A well-stocked room adorned with the colors of Africa – the evening having as its theme: “Africa, cradle of humanity – life on earth -” thanks to the decorations designed by the creator and stylist Michel Denis with the program dinner, show (singing and dancing), film screening, but also testimonials from some of those who work daily against sickle cell disease.

A great moment of conviviality, exchanges and sharing between the players in the fight against sickle cell disease and their supporters. A highlight for the association since it allows to collect donations which are used to finance its actions, but also to take stock of the advances and progress made in terms of research, new therapies in the care of patients. . Because the APIPD and its president do not lose sight of the fact that the primary objective is to inform and raise awareness about a disease that is still unknown to the general public and even to certain caregivers.

A disease still unknown to the general public

Yet sickle cell disease is the most common genetic disease in the world, affecting 50 million people. 300,000 cases are detected each year, nearly 30,000 patients and more than 150,000 healthy carriers are confirmed in France. Despite the fact that it affects famous women and men such as the American singer T’Boz, the footballer Lassana Diarra or the tennis player Jo Wilfried Tsonga, this disease is neglected by the pharmaceutical industry and does not benefit from the same attention than other genetic diseases even though it is the most frequent.

Which makes Jenny Hippocrate say that this disease remains “forgotten, ignored, racialized”. She sees it as a form of discrimination since this disease originally affected mainly blacks and mestizos. An assertion, however, undermined since according to the one who has become the emblematic figure in the fight against sickle cell disease, this disease is today not only “galloping, but cosmopolitan and global” and affects all populations.

Advances in treatment and care

However, Jenny Hippocrate does not lose hope and focuses on research with the implementation of new treatments capable of advancing the therapeutic possibilities offered to patients with sickle cell disease. The one who is also a therapist insists on the importance of volunteers who contribute to better care necessary for the quality of life of patients.

Finally, the President of APIPD wants to believe that the fact that politicians and in particular the first of them, Emmanuel Macron, the President of the Republic, is now interested in the question, marks the beginning of a grip of national conscience and perhaps a certain will to finally tackle this public health problem head on. On this subject, the Head of State should announce, on the occasion of the world day for the fight against sickle cell anemia which will take place on June 19, some lines of thought to improve the care of sickle cell patients.

In the meantime, the passionaria continues her fight, continues her training work and travels the world in the service of this cause, which she has made a real priesthood. And even if it evokes half-words a withdrawal in the future, it assures that it will be done gently with the serenity of the accomplished duty and the assured succession.

EB

APIPD Charity Gala
Theme: “Life on Earth”
Friday, June 17, 2022 from 7 p.m.
At the Chalet du Lac de Saint-Mandé
Information: Tel: 01 40 10 02 49