Words to say the evils and to cure these evils. This is the first fight led by caregivers and their various partners involved in the care of patients with sickle cell disease. A fight they lead with new tools to be more effective in the face of pain
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Published on June 13, 2022 at 5:30 p.m.
First, when talking about sickle cell disease, you have to take the time to listen to the patients themselves. Far from the scientific explanations that define the disease, they talk about their experiences, their feelings, their hopes too…
Andy is an example of all those patients from Guadeloupe who live with sickle cell disease.
Like them, he is still the one who talks about it best.
However, caregivers are moving forward. As much on the therapeutic aspect as on that of the global care, they want to believe in new steps that we record gradually. Too slowly for some, but each step is a victory for the sick and those who accompany them.
On the therapeutic aspect, although gene therapy is still at the experimental stage, transplantation in both children and adults is part of the panoply of medical strategies on offer. Finally, new molecules are now taken into account in the treatments offered.
For now, only the Crizanlizumab is fully allowed.
sickle cell disease
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In terms of support, it now has strong support, the platform Stimulab. The dedicated team at the CHUG chose this therapeutic education program to provide better information on sickle cell disease, its reality, its consequences, its management and the care currently available. A significant element to improve communication on this disease.
Remember that June 19 will also be placed under the sign of sickle cell disease since it is the date of World Sickle Cell Day. A day that will have many other directions. So, so that sickle cell disease does not vanish into silence, the dedicated teams preferred to talk about it beforehand. So that the words can soothe the evils.