Norah Rémy is now experiencing a real renaissance. She suffered from sickle cell disease and lived through years of intense pain and recurrent hospitalizations. Today she is back to normal life. Norah Rémy is the first Guyanese woman to have had an allogeneic bone marrow transplant. One of the only treatments today recognized by science.
Norah Rémy during her treatment
Norah Rémy after her transplant
Norah Remy is 32-year-old young woman who today smiles at life. She has sickle cell disease. Sickle cell disease is the most common genetic disease in the world. In France, it mainly affects people of African or West Indian-Guyanese origin. In some departments, it can affect up to 1 in 500 babies. The sickle cell disease damages red blood cells and results in anemia, infections, pain, and even strokes. It considerably reduces the quality and life expectancy of those affected. Nora Remi was two years old when she had her first seizures.
It’s a hereditary genetic disease, I’ve always had it. This was detected at birth. My first crisis, I had it at 2 years old. I made many round trips to the hospital. First for vaso-occlusive crises, these are red blood cells that clog the blood vessels after that has evolved. I had about one attack a month. I was often hospitalized. I had diseases that were grafted. I suffered a lot from necrosis, my bones were crumbling due to the lack of oxygenation. I also had a bone marrow infection, I also had blood stones and other illnesses. I had an acute chest syndrome, I had embolisms and brain damage.
Norah Remy before the transplant
She has 16 years old when his mother decides to leave Guyana to have her treated in Créteil. In Guyana, the doctors at the Andrée Rosemon hospital center tell him that Norah will never be able to walk again. She refuses fate and seek treatment. In Créteil, doctors put Norah on a drip. She will undergo blood transfusions for yearsbut she is better and can have an almost normal life. She studies, has a little boy. The crises follow one another but the young woman holds on. She decides to do a transplant, the only treatment today that gives results.
But at the time it’s still too early. Blood stem cell transplant is a therapeutic option known since 1984. In a patient with sickle cell diseasethe cells change into abnormal red blood cells. To remedy this, doctors sometimes resort to a bone marrow transplant : this process replaces the deficient bone marrow of the patient by the bone marrow from a donor with healthy stem cells.
My mother took the steps with the doctor who followed me in Créteil. At the time, you had to be 100% compatible with the donor. I was 15, 16 at the time. I could not benefit from it because my brothers and sisters were not compatible. So I continued my mother’s research, and there I was able to benefit from an allograft, the donor does not need to be 100% compatible but 50%. My older brother was and he agreed.
Norah Rémy during her treatment
The transplant of stem cells is reserved to severely affected patients, running a short-term fatal risk. It is a very dangerous, at risk that can cause death. But for Nora it wase only hope to finally have a normal life.
I had surgery on June 4th. It has been a year. Right after that it was very complicated. This is not a trivial intervention. We are very tired. All the chemos that are done upstream tire us. There is also the fight of his own body to accept the marrow and more care on the side. It’s very hard. I recovered quite quickly, the doctors were amazed. When I was hospitalized, I had no one, because there was the Covid. My twelve year old son suffered a lot. I was losing my hair, my body was changing, I was in metamorphosis. I was surrounded very much by my family, my friends, they were there for me. They supported me a lot. I feel very good today. You should know that drepanos cannot swim for very long, go into cold water. I was able to go into the sea without fear. That’s wonderful. It’s a rebirth… My life expectancy has increased.
Norah Remy after the transplant
After a year, Norah lives in Marseille surrounded by her family. Child care assistant, she has not yet returned to work because she is still recovering. By testifying, she wants to give hope to sickle cell sufferers, and show them that a new treatment is possible. The Drépa-Guyane association has been of great support and help she confides. So many people have helped her, she doesn’t want anyone to be forgotten.
In Guyana, since 1992, maternity screening has been systematic for all newborns: one in 227 babies is touched. Two thousand SS sickle cell sufferers (the most serious forms), are officially declared.