Sickle cell anemia is an inherited disease in which red blood cells are unable to properly carry oxygen throughout the body because of their distinctive crescent-like, or sickle, shape. The condition causes severe episodes of pain and fatigue, and it can lead to damage to the eyes and other organs. Approximately 100,000 people are living with sickle cell disease in the United States, and 300,000 babies are born with the condition every year across the globe. And while it can affect people of different races, a majority are African-American. Here, six men and women speak about the impact sickle cell anemia has had on their lives and families.

Do you or does someone you know have sickle cell disease? Tell us about how you manage your condition.

  1. A Career Inspired by Disease

    Cassandra Dobson, 50, Bronx

    Jennifer S. Altman for The New York Times
    Jennifer S. Altman for The New York Times
    Jennifer S. Altman for The New York Times
    Jennifer S. Altman for The New York Times
    Jennifer S. Altman for The New York Times

    Cassandra Dobson, a registered nurse, was born in Jamaica with sickle cell disease. While she was taken to the local hospital for treatment, her mother also went to see the local witch doctor for advice. The witch doctor suggested changing Ms. Dobson’s first name as a way of changing her health. So, Ms. Dobson’s parents kept changing her name until she seemed to get better. Of course, sickle cell disease normally improves in cycles, and Ms. Dobson eventually became sick again.

    In her early teens, Ms. Dobson moved to the United States. As soon as she disembarked from the plane, she had a severe sickle cell crisis. Rushed to Jamaica Hospital Medical Center in Queens, Ms. Dobson was treated for kidney failure and severe pain. She was given a blood transfusion to combat the disease.

    Ms. Dobson says that her worst symptom is fatigue, but by managing her overall health, Ms. Dobson has been largely able to avoid the strong painkillers that are so common in sickle cell care.

    Ever since her treatment at Jamaica Hospital, Ms. Dobson has pursued a career in nursing. She is dedicated to improving the care of all of her patients, but particularly to increasing awareness of sickle cell disease and the best ways to treat its symptoms.

  2. Hoping to Be Taken Seriously

    Andre Hinckson, 36, Queens

    Ed Ou/The New York Times
    Ed Ou/The New York Times
    Ed Ou/The New York Times
    Ed Ou/The New York Times
    Ed Ou/The New York Times

    Andre Hinckson was born in Guyana and came to the United States with his parents at age 12. His mother did not know she was a carrier of the sickle cell gene until her son was born with the disease.

    Sickle cell anemia causes episodes of severe pain for Mr. Hinckson, and it has affected his vision. He takes powerful painkillers to manage his pain, but his body has adapted to these medications, and they are no longer as effective as they once were. Because of this, Mr. Hinckson is unable to work.

    When Mr. Hinckson does have a severe episode of pain, he has to go to the hospital for narcotics or a blood transfusion. Because he is so frequently in the hospital, Mr. Hinckson says that staff members sometimes view him as a “drug-seeker.” He finds it frustrating that hospitals cannot find a quick way to identify him as a sickle cell patient.

  3. The Family Affair: A Child’s View

    Shanoah Moore, 8, Cincinnati

    Andrew Spear for The New York Times
    Andrew Spear for The New York Times
    Andrew Spear for The New York Times
    Andrew Spear for The New York Times
    Andrew Spear for The New York Times

    Shanoah Moore may look like an average 8-year-old girl, but she is living with sickle cell disease.

    Shanoah has occasional episodes of pain and fever, and while a heating pad helps alleviate the pain sometimes, the more severe episodes require over-the-counter pain relievers. Occasionally, Shanoah is taken to the hospital with high fever or severe pain.

    Shanoah’s teachers are all aware that she has sickle cell disease. They allow her to go to the bathroom more frequently and drink water during class to stay hydrated.

    Shanoah doesn’t feel limited by her disease. While she can’t play outside in very hot or very cold weather, she finds ways to participate in most activities.

  4. The Family Affair: Careful Monitoring

    Sonya Moore, 38, Cincinnati

    Andrew Spear for The New York Times
    Andrew Spear for The New York Times
    Andrew Spear for The New York Times
    Andrew Spear for The New York Times
    Andrew Spear for The New York Times

    Sonya Moore’s daughter, Shanoah, was born with sickle cell disease. Shanoah’s mother, Sonya Moore, did not know that she was a carrier of the sickle cell trait, and she was very upset when she found out that her daughter had this chronic disease. “My world crumbled around me,” she said.

    Ms. Moore has tried to maintain a normal family life in spite of Shanoah’s illness. Her daughter goes to school most days, but playtime is generally held indoors because those with sickle cell can’t easily maintain a constant body temperature in hot or cold weather.

    The entire Moore family knows to watch for signs that Shanoah isn’t feeling well. They have learned that if Shanoah gets quiet or suddenly feels very warm, she may be having a sickle cell crisis.

    Ms. Moore advises other parents of children with sickle cell disease to find another family going through the same thing for support. Talking to other parents, she says, can help ease the burden of the disease. Ms. Moore urges other parents to learn as much about sickle cell disease as they can to ensure their children get the best care. “You have to be an advocate for your child,” she said.

  5. Two Sons; Two Instances of Sickle Cell

    Tiffany Dews, 33, Richmond, Va.

    Casey Templeton for The New York Times
    Casey Templeton for The New York Times
    Casey Templeton for The New York Times
    Casey Templeton for The New York Times
    Casey Templeton for The New York Times

    Tiffany Dews and her husband, Ronald Dews, Jr., are both carriers of the sickle cell gene. Any child they have has a 25 percent chance of inheriting the trait from both parents, and thus having sickle cell disease. Tiffany Dews’s two sons, Tracy, 8, and Riley, 4, were both born with sickle cell disease.

    The family recently moved to Virginia from New York. Ms. Dews says that the warmer climate has helped reduce her sons’ symptoms.

    While they can participate in most activities, Tracy and his brother have to avoid contact sports and swimming because their bodies do not easily adjust to sudden changes in temperature. The family has also had to educate the boys’ teachers about sickle cell disease. They are allowed to keep a water bottle at their desk and rest when they need to during class.

    Mr. and Ms. Dews have high hopes for their sons. They encourage their children to become anything they want to be and envision a future where sickle cell disease is an afterthought in their lives.

  6. The Emotional Toll

    Gwendolyn Brown, 46, Cincinnati

    Andrew Spear for The New York Times
    Andrew Spear for The New York Times
    Andrew Spear for The New York Times
    Andrew Spear for The New York Times
    Andrew Spear for The New York Times

    Gwendolyn Brown, a social worker, believes the worst part of living with sickle cell anemia is the stigma associated with the condition. She tries to educate people about the disease in the hopes of eradicating this misunderstanding.

    Ms. Brown’s parents were told she had sickle cell anemia when she was 4 years old. At the time, a doctor suggested placing Ms. Brown in a long-term care facility. Ms. Brown credits her parents for treating her like the rest of their children. She believes that because she wasn’t coddled or treated differently, she has learned how to live a largely normal life.

    Ms. Brown tries to stay active by dancing at her church and exercising. She is careful to get needed rest, but does everything she can when she has the energy.

    Ms. Brown’s granddaughter, Erianna Harris, is also living with sickle cell disease. Ms. Brown hopes that her granddaughter will also be able to live a largely normal life without many hospital visits or periods of illness. “Get educated about sickle cell, and stay educated,” she advises.