the daily life of Manel, 15 years old, suffering from sickle cell anemia

The Rouen University Hospital is organizing an awareness day for sickle cell anemia on Tuesday June 19, 2024, a little-known yet common genetic disease. Diagnosed at birth, this sometimes very painful chronic disease is associated with anemia, and requires a very restrictive lifestyle.

Manel is a 15-year-old girl, brunette and smiling. We met her in her room at the Rouen University Hospital, where she took the time to explain to us the illness from which she suffers. Sickle cell disease is a genetic disease that affects hemoglobin, the protein that helps transport oxygen in the body. The disease results in anemia, high vulnerability to infections, and painful crises.

In his hands, Manel holds a curious assemblage, two plastic bottles joined together in which round pellets circulate, supposed to represent the red blood cells in the veins. “It is a representation of veins. What we see here are normal red blood cells.“points to the young girl. That is to say, very round red blood cells. Hers are different, they are more shaped like a crescent moon.”When we are in crisis, in my current case, they all grab onto each other, it gets blocked in the veins, it hurts and the oxygen doesn’t get through” she explains.

The young girl did this demonstration in front of another audience a few days ago, for her patent oral exam. Manel likes school, but she goes very little. Her treatments require her to be hospitalized for about one week per month.

I know I’m going to take more medicine, I know I’m going to be in pain. When I’m in the hospital, I’m in more pain than normal. It’s not that I don’t like nurses, but the hospital isn’t the happiest place for a teenage girl.

Manel, 15 years old, suffering from sickle cell anemia

at France 3 Normandy

His daily life at the hospital is divided between medical consultations, blood tests and transfusions. Doctor Cécile Dumesnil, hospital practitioner hemato-oncologist and pediatrician at Rouen University Hospital, regularly visits the young girl during her hospitalizations. She emphasizes the need to detect the disease as quickly as possible to avoid complications such as infections and better manage pain. “The pain, excruciating, can be extremely intense, and can occur at any time. It’s hard to understand when you don’t have sickle cell disease. So we have to listen to patients, hear them when they are in pain” develops Cécile Dumesnil.

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30,000 people live in France with this disease, which affects nearly 600 newborns each year. Sickle cell disease is the most common, yet least understood, genetic disease.

Its particularity is that it affects immigrant populations more. “It is mainly in sub-Saharan and African countries, in the Overseas Territories. We will say that it affects minorities. It is also the public who is affected by this disease which means that there is not sufficient coverage” deplores Fabrice Matongo, the president of the association “Solidarity against sickle cell anemia in Normandy” which is organizing this awareness day at the Rouen University Hospital.

This disease affects millions of people around the world, and sufferers require blood transfusions from people with blood compatible with theirs. Which explains why the EFS, French Blood Establishment, also organizes awareness days for this disease.

Recovery is possible, via a bone marrow transplant. Manel has a compatible donor, or rather a donor: his little sister. The process is long and risky, but remains a reason for hope.