Tuesday, July 15, 2014

Research that Benefits Children and Families


The National Heart, Lung and Blood Institute and Sickle Cell Disease

I choose this topic because my niece has sickle cell, both her parents has the sickle cell trait.  She is now fourteen years old, due to the numerous times my niece has had to stay in the hospital because of this disease my sister recently participated in a trial duty that has resulted in a prescribed drug that has helped reduced the amount of crisis that she’s had within the last several years. The National Heart Lung and Blood Institute (NHLBI) has researched sickle cell disease since its founding as the National Heart Institute in 1948. NHLBI has spent more than $1 billion researching the condition.

Sickle cell disease is inherited. People who have the disease inherit two copies of the sickle globin gene—one from each parent. The gene codes for production of an abnormal hemoglobin. Persons affected with this condition produce abnormal red blood cells containing hemoglobin S instead of normal hemoglobin A. When red cells with Hemoglobin S lose their oxygen, they become distorted and shaped like crescents or sickles. These cells are sticky and can block blood vessels, leading to organ damage, and severe episodes of pain known as crises.  Sickle cell disease causes life-long anemia.  Persons with sickle cell disease are at risk of pneumonia, bone infections, and other infections.

Sickle cell disease lowers quality of life for thousands of American families.  The genetic blood disorder affects 70,000–100,000 Americans, the majority of whom are African American or Hispanic. Sickle cell disease is most common in people whose families come from Africa, South or Central America, Caribbean islands, Mediterranean countries, India, and Saudi Arabia.  Sickle cell disease occurs in approximately one out of every 500 African American births and one out of every 36,000 Hispanic American births.  About 2.5 million people in the United States have sickle cell trait, which occurs when a person inherits one copy of the globin gene.

Bone marrow transplants offer a cure for sickle cell disease for some patients, but due to a scarcity of matched donors, it is not a cure for everyone. Researchers are working on ways to make this cure more widely available.

Research has helped patients live longer. In the 1970s, life expectancy for individuals with sickle cell disease was about 14 years. Today, many individuals live into their 40s and longer. Antibiotics to prevent and treat infections have reduced childhood deaths from the disease by more than 80 percent. A blood screening test done on newborns is now performed in all U.S. Research on the condition has advanced other areas of medicine including genetics and molecular biology.  The NHLBI is supporting research on more and better treatments to ease the burden of sickle cell disease on those affected. Current research is exploring ways to reduce the risks of serious complications, including stroke, hypertension, respiratory problems, and vulnerability to overwhelming bacterial infections.

To find out more about this disease log onto http://www.nhlbi.nih.gov/health/health-topics/topics/sca/

 

5 comments:

  1. Sandra,

    I have always strayed away from research studies that involved medicine. I always had a negative outlook. I would have to say in this instance I would encourage being a research candidate. You research experience has changed my outlook on research studies involving medication.

    ReplyDelete
  2. Sandra,

    Thank you, this is a recent topic in my family and we are waiting on more testing to be done to determine if sickle cell exist due to both parents having the trait. Research definitely provides information and facts that will help families understand.

    ReplyDelete
  3. Similar to your topic I also chosen to reaseach an disease and disorder that affect so many young children around the world. Medical research is highly vital to mankind and should be carried out accordingly to ethical codes and institutional principles. I hope your sister and nice continue to contribute in Sickle Cell research to one day find the cure!

    ReplyDelete
  4. Sandra,
    You have chosen a great topic. I found out that I'm a carrier of the sickle cell trait but not the disease. My sister and I are the only two out of 6 siblings that carry the trait. I found out that I was a carrier when I became pregnant with my first child so I had to make sure my husband wasn't a carrier as well otherwise our child would have developed the disease. My son is a carrier of the trait as well but my daughter is not. I probably should have been more interested in this topic but over the years I chose not to deal with it. I look forward to reading your information over the duration of this course.

    ReplyDelete
  5. The medical field is very peculiar. I love that you are branching out because of personal experiences. But I must ask, what is it that you will be looking for? how to cope with and become a team with other issues that may arise due to medical problems? Sickle cell is a disease that I believe is more prominent in african americans, and it is a very long road. I had a fried through eighth grade and he is no longer with us. He had one of he kindest, purest spirits. Sad to hear he lost the battle, but now the research has come a long way.

    ReplyDelete