the revival of Nora, first type

Now Nora Rémi is experiencing a true renaissance. Suffering from sickle cell anemia, she endured years of intense pain and repeated hospitalizations. Today she is back to normal life. Nora Rémi is the first Guyanese woman to receive an allogeneic bone marrow transplant. One of the few treatments recognized by science today.




Nora Rémi after her transplant



©DR

Nora Remi is 32 year old young woman smiling at life today. She has sickle cell anemia. is sickle cell anemia the most common genetic disease in the world. In France, people of African or West Indies-Guyanese origin are particularly affected. In some departments it may affect up to 1 in 500 babies. That Sickle cell anemia damages red blood cells and leads to anemia, infection, pain and even stroke. It significantly reduces the quality of life and life expectancy of those affected. Nora Remi was two years old when she had her first seizures.

It’s an inherited genetic disease, I’ve always had it. This was established at birth. I had my first crisis when I was 2 years old. I made many trips back and forth to the hospital. First for vaso-occlusive crises, which are red blood cells that clog blood vessels after that develops. I had about one seizure a month. I was often in the hospital. I had diseases that were transplanted. I suffered greatly from necrosis, my bones were crumbling due to the lack of oxygen supply. I also had bone marrow infection, I also had blood stones and other diseases. I had acute chest syndrome, I had embolism and brain damage.

Nora Rémi before the transplant

Nora Rémi before the transplant



©DR

she has 16 years old when his mother decides to leave Guyana to have them treated in Créteil. In Guyana, the Doctors of the Hospital Center Andrée Rosemon tell him that Nora will never be able to walk again. She rejects fate and seek treatment. In Créteil, the doctors put Nora on an IV. She will submit blood transfusions for yearsbut she is doing better and can lead an almost normal life. She studies, has a little boy. The crises follow one another, but the young woman perseveres. She decides to perform a transplant, the only treatment that produces results today.

But back then it’s still too early. Blood stem cell transplantation is a treatment option that has been known since 1984. In a patient with Sickle cell anemiathe cells change into abnormal red blood cells. Doctors sometimes resort to remedying this a bone marrow transplant : This process replaces the patient’s deficient bone marrow with the bone marrow from a donor with healthy stem cells.

My mother took the steps with the doctor who followed me in Créteil. Back then you had to be 100% compatible with the donor. I was 15, 16 at the time. I couldn’t benefit from it because my siblings weren’t compatible. So I continued my mother’s research and was able to benefit from an allograft there, the donor doesn’t have to be 100% compatible, it has to be 50%. My older brother was and he agreed.

Nora Rémi during her treatment

Nora Rémi during her treatment



©DR

The transplant of stem cells is reserved for severely affected patients run the risk of death for a short period of time. It’s a very dangerous, in danger, which can lead to death. But for Nora, that was itWe just hope to finally have a normal life.

I had surgery on June 4th. It’s been a year. Right after that it was very complicated. This is not a trivial intervention. We are very tired. All the chemo done upstream tires us. In addition, there is the fight of your own body for the marrow and more care on the side. It’s very hard. I recovered fairly quickly, the doctors were amazed. When I was admitted to the hospital I didn’t have anyone because there was the Covid. My twelve-year-old son suffered greatly from this. I lost my hair, my body changed, I was in a metamorphosis. I was very surrounded by my family, my friends, they were there for me. You have been very supportive. I feel very good today. You should know that drepanos cannot swim for very long, go into cold water. I could go into the sea without fear. That’s wonderful. It’s a rebirth… My life expectancy has increased.

Nora Rémi after the transplant

Nora Rémi after the transplant



©DR

After a year, Nora lives in Marseille, surrounded by her family. Childcare assistant, she has not returned to work yet as she is still recovering. By saying She wants to give sickle cell sufferers hope and show them that a new treatment is possible. The Drépa-Guyane association was a great support and help she trusts. So many people have helped her, she doesn’t want anyone to be forgotten.

in Guyana, since 1992 maternity screening has been carried out systematically for all newborns: one of 227 babies is touched. Two thousand SS sickle cell patients (the most severe forms), are officially declared.

Leave a Comment