June 19 is National Sickle Cell Awareness Day. The Sickle Cell Association of Canada and the Interdisciplinary Center for Black People’s Health at the University of Ottawa organized a conference on Monday to raise awareness of the issues related to this disease.
Biba Tinga is the President of the Sickle Cell Disease Association of Canada. She calls for more investment in research and treatment for this disease from which her son suffers.
She estimates that about 6,000 Canadians, mostly people of African descent, suffer from it. We do not have a multitude of drugs to treat this disease. […] And the worst thing is that there are not even enough doctors specialized in this disease to cure it
she adds.
” For a disease that was discovered more than 100 years ago, that’s not enough. »
Dr. Yves Pastore, pediatric hematologist-oncologist at the University of Montreal, panelist at the awareness conference against sickle cell disease, also calls for more investment and the development of a register of cases of people with sickle cell disease to fuel research. around this disease.
Sickle cell anemia is one of the most common genetic diseases in Canada
he said. It is important to be able to serve all the communities.
Dr. Pastore advocates for prenatal screening for this disease. He explains that this will make it possible to start the preventive treatments
related to this disease.
Yacouba Traoré, an Ottawa resident who has sickle cell disease, also wants more funds to be allocated to this issue. Since sickle cell anemia is a disease that affects more people of African descent, discrimination may explain why there are not enough funds to treat this disease
he believes.
A difficult daily life
Ulysse Guerrier, from Toronto, has lived with sickle cell anemia for 34 years. His health depends on monthly blood transfusions. Every four weeks, I receive an average of 10 bags of blood.
He appeals for solidarity for more blood donations by donors from ethnic communities.
Sickle cell anemia, also called sickle cell anemia, is a blood disorder or hemoglobin disorder that causes deformation of red blood cells. Deformed red blood cells prevent the efficient transport of oxygen to the organs of the body. Deformed blood cells can also collect in small blood vessels and block blood flow.
Of the severe hemoglobin diseases, sickle cell anemia is the most common form. A hereditary disease, that is to say transmitted by parents and present from birth, sickle cell anemia is also a chronic disease, therefore a disease that lasts a lifetime, even if it is treated.
Anyone can get sickle cell anemia. However, the disease is more common in people from Africa, the Mediterranean, the Caribbean, the Middle East and parts of India and South America.
Source : quebec.ca
In addition, his daily life is marked by the taking of painkillers. Since I was born, I live with pain
, he explains. He adds that even atmospheric pressure or changes in temperature can amplify his pain. As soon as it’s -15 and much colder, I have a lot more difficulty.
” I have to take medication throughout the day to try to decrease the intensity of the pain to function. […] When it’s more humid, when it rains, I feel more pain. »
Mr. Guerrier explains that sickle cell anemia complicates the professional life of people who have it. The fact that you miss a lot of workdays has an impact on the organization. I lost a lot of jobs because of that.
The disease has also complicated his development since childhood. I missed a lot of classes at school. I repeated my 6th year at the time
he said. I had to change my career path to take courses in a shorter program
he adds.
Same story on the side of Mr. Traoré, who is executive director of the Rideau Rockliffe Community Center in Ottawa. I lost months of school with this disease.
” You can’t play soccer if you need a break every 15 minutes. Daily challenges that make normal very difficult. »
Mr. Traoré considers himself lucky, however. In a few weeks, I will be 50 years old. I know many people who are not even lucky enough to reach 10 years with this disease
he said.
Reference-ici.radio-canada.ca