Renal disease mediated by Apol1 has no face. It is a condition linked to the gene that can have an impact on a black person from any environment, from a stoic grandmother to a vibrating adolescent. There are many opportunities where it does not reveal itself before it is too late.
Black Health Matters Harlem Week Health Summit welcomed patient defenders and health professionals to discuss the importance of sharing information on renal diseases mediated by Apol1. Kemi Williams, PHD, MBA, described the relationship of the disease with the black community.
“It is a chronic renal disease with rapid progression that disproportionately affects people of West African descent, especially African-Americans,” she said.
“Knowledge and awareness of the disease is very low,” she added. “We hope to change this today.”
Most of us have kidney disease do not know it.
Daryl O. Crenshaw, MD, noted the horrible impact of limited consciousness. “We now understand that around 37 million Americans have kidney disease, but the warning is that most do not know they have it,” he said.
“At least 50 percent of black Americans have at least one of the variants of APOL risk, and having two of the risk variants of Apol increases your chances of developing a kidney disease.”
Kidney disease can lead to serious complications such as kidney failure. “African-Americans develop renal failure at rates 4 to 5 times higher than Americans of European origin,” according to tendencies of endocrinology and metabolism.
Joshua Albright discovered his kidney disease by accident.
The patient defenders and the Joshua and Jorden Albright brothers shared their family experience with a renal disease mediated by Apol1.
Joshua accidentally learned his kidney problems when visiting a family member affected by a kidney disease. “My aunt had given a kidney to another family member, and we stopped near her house just to check it, and she had a blood pressure machine so that she could check her blood pressure, and my sister and my cousins played with the blood pressure machine. They put the blanket on my arm, and my levels were extremely high,” he said.
It didn’t bother him much. His youth deceived him by believing that it was not a big problem. “At that time, I was 17, I was 18 years old. I don’t care what my blood pressure said, to be honest. I was trying to go and see what was the plan that evening with my friends,” he said.
His mother and doctor took him seriously. “My mother actually contacted my primary care doctor, and they told her that I should be rushed to urgent care just to get a type of follow -up,” said Joshua.
“Create to all these mothers and sisters who are the defenders and warriors of health care within their families, pushing them to pass a test,” said Williams.
After discovering that his brother had the variant of the Apol-1 gene, Jorden was also tested and he had another.
After the diagnosis of his brother, Jorden was also diagnosed. The family was attentive to the risk. “I am very, very blessed that my brother was diagnosed,” he said. “We have learned that Josh had the variation of the G1. I had the G2. “
How Joshua did the work of participation in the clinical trial during a student.
Joshua was open to his decision to participate in a clinical trial. One of the reasons why he did not hesitate was that there were concerns about his private life as a student and his quality of life. He thinks that it is essential to focus on the patient’s life outside of his medical concerns in clinical trials. “I was diagnosed just before university. They gave me the flexibility to be able to coordinate home visits, “he said.
“I remember that when I was at university, I was a bit … I felt like I considered my kidney disease as a weakness. I didn’t want everyone in the dormitories to know that I had a nurse who came to check me, so I would actually go home to my parents, and they would have a nurse to meet me there. I would make home visits. “
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Tendencies of endocrinology and metabolism
