Recovery from sickle cell disease brings a mixture of anxiety and hope
Some people who have lived with the disease for a long time say they worry about healthy living, while others worry about barriers to health. getting treatment.
Terry Jackson leads a life dominated by sickle cell disease. The genetic condition, in which misshapen red blood cells get stuck in blood vessels, causes him daily bone aches and lower back pain and sent him to hospital for treatment of pain and life-threatening emergencies for five decades . He receives frequent transfusions of fresh blood.
"You can't escape it," said Dr. Jackson, owner of a science communications company. “It is life changing. It's every breath you take. »
The illness guided each of his choices. This led him to obtain a doctorate. in Genetics from Duke University because he became fascinated with the underlying science. It's at the heart of who he is.
"I ask myself, 'Who am I without sickle cell disease?'" Dr. Jackson said, adding, "He It's even hard to imagine what would I be doing, what would I be, if I didn't have it."
This year, Dr Jackson and others People with sickle cell disease may have the option to finally live without the damage caused by the disease.Two pharmaceutical companies are seeking Food and Drug Administration approval for gene therapies that may provide what amounts to a cure.But the decision to take the medicine - if it were to become available - is not so simple.
Some like Dr. Jackson worry after a life adapted to their disease and do not don't know how to start over as healthy people Do they go back to school after dropping out because of their illness? after thinking that with frequent sickle cell hospitalizations they were unemployable? What if entering this new life wasn't so easy?
Others fear that the logistical complexities of gene therapies will jeopardize their ability to access it.
These and other dilemmas illustrate an often hidden aspect of medical advances: a long-awaited cure can come with apprehension.
Sickle cell disease affects at least 100,000 people in the United States and millions worldwide. It primarily strikes black and Hispanic or Latino people, but it also occurs in people of Mediterranean and Indian descent. People with the disease face acute pain, strokes, tissue and organ damage, and often death at an early age.
Two gene therapy drugs, one from Bluebird Bio and the other by Vertex and CRISPR Therapeutics, have gone through clinical trials. Both efforts reported that patients were freed from debilitating pain episodes. Their blood was no longer flooded with misshapen red blood cells.
Some people who have lived with the disease for a long time say they worry about healthy living, while others worry about barriers to health. getting treatment.
Terry Jackson leads a life dominated by sickle cell disease. The genetic condition, in which misshapen red blood cells get stuck in blood vessels, causes him daily bone aches and lower back pain and sent him to hospital for treatment of pain and life-threatening emergencies for five decades . He receives frequent transfusions of fresh blood.
"You can't escape it," said Dr. Jackson, owner of a science communications company. “It is life changing. It's every breath you take. »
The illness guided each of his choices. This led him to obtain a doctorate. in Genetics from Duke University because he became fascinated with the underlying science. It's at the heart of who he is.
"I ask myself, 'Who am I without sickle cell disease?'" Dr. Jackson said, adding, "He It's even hard to imagine what would I be doing, what would I be, if I didn't have it."
This year, Dr Jackson and others People with sickle cell disease may have the option to finally live without the damage caused by the disease.Two pharmaceutical companies are seeking Food and Drug Administration approval for gene therapies that may provide what amounts to a cure.But the decision to take the medicine - if it were to become available - is not so simple.
Some like Dr. Jackson worry after a life adapted to their disease and do not don't know how to start over as healthy people Do they go back to school after dropping out because of their illness? after thinking that with frequent sickle cell hospitalizations they were unemployable? What if entering this new life wasn't so easy?
Others fear that the logistical complexities of gene therapies will jeopardize their ability to access it.
These and other dilemmas illustrate an often hidden aspect of medical advances: a long-awaited cure can come with apprehension.
Sickle cell disease affects at least 100,000 people in the United States and millions worldwide. It primarily strikes black and Hispanic or Latino people, but it also occurs in people of Mediterranean and Indian descent. People with the disease face acute pain, strokes, tissue and organ damage, and often death at an early age.
Two gene therapy drugs, one from Bluebird Bio and the other by Vertex and CRISPR Therapeutics, have gone through clinical trials. Both efforts reported that patients were freed from debilitating pain episodes. Their blood was no longer flooded with misshapen red blood cells.
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