What is the Sickle Cell Program?

The Sickle Cell Program:

  • Provides preventive care, treatment and community support for children who have sickle cell disease.
  • Offers education and medical care related to sickle cell trait in people who carry 1 copy of the sickle cell gene
  • Serves people who want to know more about sickle cell disease, including schools and community groups

We work with children, families and doctors throughout the region. Our team is based at Seattle Children’s Odessa Brown Children’s Clinic (OBCC), a community clinic located in Seattle’s Central District.

What’s special about the Sickle Cell Program at Seattle Children’s?

To care for all aspects of your child’s health, our team brings together providers from many fields – medicine, nursing, social work, emotional health and learning.

If your child needs other types of care, we involve experts at OBCC and Seattle Children’s, such as genetic counseling. For treatment requiring an overnight hospital stay, we offer care at Seattle Children’s main campus.

Our sickle cell team cares for patients with sickle cell disease throughout Washington, Alaska, Montana and Idaho. Our services extend even to patients who never visit our clinic in person. We want to help families with sickle cell get whatever they need, wherever they are.

For more information, call 206-987-7263 to reach the OBCC sickle cell advanced practice provider. To make an appointment, call 206-987-7402.

We provide these services:

  • Prevention is a major focus of care for children with sickle cell disease.

    Check-ups are an important way to keep children with sickle cell healthy. During regular visits, we check your child’s growth and test their blood and pee for signs of problems. We help you take steps to prevent problems before they start.

    Children with sickle cell disease do best when they, their families and their schools know about their disease and how to take care of it.

    We teach about:

    • Warning signs to watch for
    • What do to when problems arise
    • How to cope with pain
    • How to prevent infection
    • How to avoid hospital stays

  • We offer a full range of treatments for children with sickle cell disease – including medicines such as hydroxyurea, blood transfusions and stem cell transplants.

    We help your child control pain. We also help prevent, find and treat infection and complications like severe anemia, breathing problems and strokes.

  • We help our young patients keep getting the care they need as they become adults. We work to assure a smooth transition to the adult sickle cell clinic at the Seattle Cancer Care Alliance.

  • Parents who have 1 child with sickle cell disease are at risk for having other children with the disease.

    Other family members also may carry 1 copy of the sickle cell gene (called sickle cell trait). They don’t have the disease but they can pass the risk to their children.

    Seattle Children’s genetic counselors help family members understand their risk and get tested for sickle cell trait if they want to.

  • A local community group holds monthly meetings for patients, families, people with sickle cell trait and others who are interested in sickle cell. At these social gatherings, people can learn more about the disease and get support.

Who needs the Sickle Cell Program?

Our Sickle Cell Program can benefit many types of people:

  • Children who have sickle cell disease and their families. Many of our new patients are babies diagnosed with sickle cell disease after routine newborn testing.
  • Families who are planning to move to the Seattle area and want to arrange care before they arrive.
  • Parents who have a child with the disease and want to know about the risk of having another child with the disease.
  • Schools or community groups that want to learn about sickle cell disease and trait.

Where We Help

  • We provide care to children with sickle cell disease at OBCC in Seattle’s Central District. You can get care at the clinic even if you get most of your healthcare elsewhere.

    We also consult with families and doctors and help coordinate children’s care.

  • For children who live in other parts of the state and get most of their care from doctors and hospitals close to home:

    • You may visit us at OBCC
    • Your families and doctors can consult with us
    • We can help coordinate your care

    Each summer we hold free camps for children with sickle cell disease. Camps take place on Vashon Island in Puget Sound.

    Northwest Sickle Cell Collaborative

    We are the founding member of the Northwest Sickle Cell Collaborative (NWSCC). The group’s goals are to improve and streamline screening, care and education for people with sickle cell statewide. Dr. M. A. Bender, our program director, leads the group.

    NWSCC combines the resources of OBCC, Seattle Children’s, Mary Bridge Children’s Hospital (Tacoma), Sacred Heart Children’s Hospital (Spokane) and the Seattle Cancer Care Alliance.

  • We work with children, families and doctors from other places in the Northwest to assess children’s needs and care. Children do not have to travel to Seattle to get our advice.

    We get information from children’s families and doctors about:

    • Their health
    • Their care
    • The effects of sickle cell disease on their life at home and school

    Based on this information, we assess how their bodies are working. We also check to see if:

    • They are getting the exams and tests they need.
    • They are getting the treatments they need for fevers and pain.
    • They are getting care for any problems with their breathing, heart or nervous system.
    • Their families know signs to watch for that may mean their child needs other treatment. We check whether families know what to do if a child has these signs.
    • Their schools and doctors at home have the information they need about the disease.
    • Their families are connected to a hospital near home where doctors know about sickle cell disease.

Who is on the sickle cell team?

Our team members have extra training and years of experience in the special needs of children and adolescents.

We work with professionals from many fields to plan treatment and to care for your child.

Contact Us

You can contact the OBCC sickle cell advanced practice provider at 206-987-7263 for more information. Call 206-987-7402 for an appointment.

Schedule an appointment

  • To make an appointment, you can call us directly at 206-987-7402 or get a referral from your child’s primary care provider.
  • If your child has seen another doctor for sickle cell disease, we’ll ask you to send those medical records.
  • We encourage you to coordinate with your pediatrician or family doctor when coming to Seattle Children’s.
  • Learn about resources such as useful websites, videos and recommended reading for you and your family.
  • Providers, call 206-987-7402 to refer a patient.