Sickle cell disease

Sickle cell disease overview

Sickle cell disease is a group of inherited blood disorders. It causes red blood cells to take on a crescent (sickle) shape and become rigid. These cells can break apart easily, leading to anemia. Because they are sticky, they can also form clumps and stick to the walls of blood vessels. This can slow or block the flow of blood and make it harder for your body to get oxygen. 

At Fred Hutchinson Cancer Center, we care for adults with sickle cell disease. Along with our local patients, we see many people from farther away, like Alaska. They get most of their care near home, but they also come here for treatment and advice from our experts. We provide all the standard therapies as well as innovative new options. 

Our doctors are national leaders in sickle cell research. Often, our sickle cell disease patients choose to join clinical trials — led by world-class specialists from Fred Hutch and UW Medicine — to be able to try the newest therapies that are not available anywhere else.

Anemia A condition in which the number of red blood cells is below normal. Red blood cell A type of blood cell that carries oxygen in the body. Standard care A treatment or other intervention currently being used and considered to be of proven effectiveness based on past studies.

Fred Hutch: A Leader in Sickle Cell Disease Treatment

Many health care providers in the community do not have much experience treating adults with sickle cell. More than half of doctors say they have no patients with this condition. They also say they are not comfortable managing acute and chronic pain from the disease.1

At Fred Hutch, you will get state-of-the-art care from some of the world’s leading hematologists. The team in our Sickle Cell Disease Clinic has the training and experience to meet your needs.

Hematologist A physician who specializes in diseases of the blood and blood-forming tissues.
Transition from pediatric to adult care

The outlook for people with sickle cell disease has improved greatly in the past 50 years. Early diagnosis and advances in treatment have made a difference.

In countries like the United States, with well-resourced health care systems, more than 90 percent of children with the disease live well into adulthood. The keys are learning how to take the best care of yourself and seeing a health care team that understands your needs. 

In the Seattle area, children with sickle cell are treated at Odessa Brown Children’s Clinic, which is part of Seattle Children’s. 

We work closely with Seattle Children’s to help young adults and their families make a smooth switch to adult care at Fred Hutch. Our focus is on giving young adults the information, services, skills and support they need to live a long, healthy life. 

If you are a young adult with sickle cell disease (or their parent or guardian), talk with your pediatric team about getting ready to move to adult care. Contact Fred Hutch to request an appointment with our experts.
 

Request an Appointment 

Seattle Children’s Sickle Cell Program

Transition from pediatric to adult care

When children with sickle cell disease near adulthood, it’s time to move on to doctors who specialize in caring for adults. 

Your First Appointment

If you have sickle cell disease, Fred Hutch is here for you. 

From the first time you come to see us, your clinic team will begin getting to know you and your family. What are your questions? What are your concerns? 

We will also explain the treatment options for your specific situation. Before you leave, your team will make sure you understand the next steps.
 

How Does Fred Hutch Approach Treatment?

The safest, most effective and most widely accepted therapies for sickle cell disease are known as the “standard of care.” For many patients, these therapies will be a large part of their treatment. At Fred Hutch, we provide all standard therapies for this condition. We know how to choose the right ones for you and how to deliver them to give you the best chance at a full and active life.

Our doctors and researchers are always asking how we can make sickle cell disease treatments more effective and reduce side effects as much as possible. This is why we do clinical trials (also called clinical studies). Through these studies, we are able to offer you therapies that aren’t available everywhere. A therapy that is going through trials today may become the new standard of care tomorrow.

Along with treating your disease, a group of world-class professionals is here to support you. This team includes advanced practice providers, pain medicine specialists, pharmacists, nurses, dietitians, physical therapists, social workers and psychologists. We also include supportive care services for your physical, mental and emotional well-being. 
 

Clinical trial A type of research study that tests how well new medical approaches work in people. These studies test new methods of screening, prevention, diagnosis or treatment of a disease. Side effects A problem that occurs when treatment affects healthy tissues or organs. Some side effects of cancer treatment are nausea, vomiting, fatigue, pain, decreased blood cell counts, hair loss and mouth sores. Standard care A treatment or other intervention currently being used and considered to be of proven effectiveness based on past studies. Standard care A treatment or other intervention currently being used and considered to be of proven effectiveness based on past studies.

Treatment Plan and Process

You are unique, and your care team will design a treatment plan specifically for — and with — you. At Fred Hutch, doctors with knowledge and experience in sickle cell disease will plan and provide your care.

Our doctors provide the full range of sickle cell disease treatments. Based on your exact case, your treatment may include medicines, like hydroxyurea, crizanlizumab, L-glutamine and voxelotor, and blood transfusions. For some patients, a blood or marrow transplant may be an important option. Your Fred Hutch team works to reduce your risk for painful episodes and make sure you get the care you need when you do have pain. We also help to deal with any other symptoms you have, maintain your health and prevent or manage complications.

As you go through treatment, your needs may change. Your care team at Fred Hutch is with you each step of the way. For example, we will help you deal with any side effects you have. We may suggest adding a new therapy that was just approved. To protect your health over the long term, we will keep seeing you for as long as you need us.

Side effects A problem that occurs when treatment affects healthy tissues or organs. Some side effects of cancer treatment are nausea, vomiting, fatigue, pain, decreased blood cell counts, hair loss and mouth sores. Symptom A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. Some examples of symptoms are headache, fatigue, nausea and pain. Treatment plan A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A detailed plan with information about a patient’s disease, the goal of treatment, the treatment options for the disease and the possible side effects and expected length of treatment. A treatment plan may also include information about how much the treatment is likely to cost and about regular follow-up care after treatment ends.

For Caregivers

Caregiver icon

When someone close to you is living with sickle cell disease, you might step into the role of caregiver. Being a caregiver can mean many things, from lending a hand with daily living tasks to helping with medical decisions. It can also mean dealing with your own emotions and stress.

At Fred Hutch, caregivers are valuable members of a patient’s care team. We see every day that your presence and your support make a difference. We know that what your friend or family member is going through affects you, too.

Part of our mission is to help you take care of yourself. Caring for yourself is good for your own physical, mental and emotional health. It also helps you give your best to your loved one. Our social workers, Spiritual Health team and Patient and Family Resource Center staff are here to help support you.

Caregiver A person who gives care to people who need help, such as children, older people or patients who have chronic illnesses or disabilities. A person who gives care to people who need help taking care of themselves, such as children, older people or patients who have chronic illnesses or disabilities. Caregivers may be health professionals, family members, friends, social workers or members of the clergy. They may give care at home, in a hospital or in another health care setting.

Other Resources

Care team
Care team

At Fred Hutch, a team of dedicated people surrounds you and your family to give you the highest level of care and support. You are the most important person on your care team. Our patients are at the center of everything we do.

Research
Research

Fred Hutch is a national leader in sickle cell research. Our scientists and physicians are working all the time to improve current treatments for sickle cell disease and develop new ones so every person with this disease lives a long, healthy life. 

Resources
Resources

There are many resources for learning about your disease, as well as organizations that provide support. Health educators at the Fred Hutch Patient and Family Resource Center have put together a list of trusted sources to help you get started.

1. ASH Sickle Cell Disease Initiative Fund, American Society of Hematology.