Changing the Lives of Patients with SCD
As the home of the largest center for sickle cell disease in New England, BMC is committed to providing excellent care inside and outside the exam room. Our world-renowned experts work with you and your families to deliver the latest therapies, personalized care, and support beyond compare.
What to Expect
Sickle cell disease is diagnosed with a blood test that looks for misshapen red blood cells. In the United States, this test is done in every newborn.
- If your newborn has sickle cell disease, doctors will likely do other tests to see if they have any other effects from the disease already, like issues with their organs.
- If your newborn has one copy of the sickle cell gene – called sickle cell trait – your doctor will refer you to a genetic counselor. This is a healthcare professional trained to help you understand what sickle cell trait means and how it may affect you.
If you or your partner have sickle cell disease or the sickle cell trait, you can have your unborn baby tested for the condition. This test involves taking a small sample from either the placenta or amniotic fluid and testing it for the sickle cell gene. These tests have a small risk of pregnancy complications but in general are very safe. Talk to your doctor about whether this screening is right for you.
If your child has sickle cell disease, you’ll get connected with BMC’s Center of Excellence for Sickle Cell Disease, the largest center for this condition in New England. Specialists in pediatric sickle cell disease will help you determine the best treatments to help your child live as healthy and normal a life as possible.
Some people may also get diagnosed with sickle cell disease later in life. If you have symptoms and risk factors of SCD, your doctor may recommend the same blood test to look for misshapen blood cells. If you do get diagnosed with SCD, you’ll be connected to our adult clinic in the Center of Excellence for Sickle Cell disease for support and treatment.
Treatment for sickle cell disease depends mostly on what your symptoms are and how severe those symptoms are. The goal of treatment is to avoid pain crises, make other symptoms better, and prevent complications of SCD.
Your care team will work with you to make sure that you are getting the best treatment for your symptoms and to reduce your risk of complications. As your needs change over time, they’ll continue to make sure you’re getting the care you need.
Treatments for SCD may include:
- Managing and preventing pain crises: Narcotics and other pain medications can help during a pain crisis, while hydroxyurea, l-glutamine, and crizanlizumab are medications that can all reduce how often you have a pain crisis
- Reducing complications: Transfusions of normally shaped red blood cells help prevent complications by increasing the number of red blood cells you have not affected by SCD
- Preventing infections: Children with SCD might take penicillin for the first five years of their life, because infections can be life threatening to them. Adults with SCD who have had certain illnesses like pneumonia or have had their spleen removed may also need to take penicillin regularly.
Traditionally, SCD could only be treated, not cured. But now, potential cures are available for people who meet certain criteria. Talk to your care team about whether or not you qualify. Curing SCD can be a long, complex process, but our team will be there every step of the way with you.
- Stem cell transplant: A stem cell transplant, or bone marrow transplant, is when your bone marrow is replaced by bone marrow from a donor without sickle cell disease. This procedure is most often done in children and is only for people with severe symptoms and complications from SCD.
- Gene therapies: Gene therapies are an exciting new cure for adults with sickle cell disease. Boston Medical Center is the only hospital in New England to offer this transformative therapy to eligible adults, and we offer both FDA-approved gene therapies for sickle cell disease, Casgevy and Lyfegenia.
Sickle cell disease can affect every aspect of your life. That’s why BMC’s sickle cell team is committed to supporting you in and out of the exam room. Our unmatched treatment experience, at the largest center for sickle cell disease in New England, includes:
- An experienced group of pediatric and adult hematologists, pulmonologists, primary care physicians, nephrologists, and psychologists, as well as research nurses, research coordinators, social workers, case management, and a patient navigator
- Unique programs to help patients navigate the transition of care from pediatrics to adulthood and take responsibility for their own health
- A diverse team that speaks several languages, as well as translation services for 263 languages
- Access to potentially life-changing clinical trials, as the leader in the Massachusetts sickle cell clinical trials unit of the American Society of Hematology Clinical Trials Network
- Support groups specifically for people with sickle cell disease, to help you connect with and learn from others
Finding Hope for Sickle Cell Disease at BMC
Boston Medical Center is an important part of Helen’s life. Not only did she meet her partner of 30 years at BMC, Helen’s daughter and grandchildren are also patients. “Thanks to BMC, I am still here enjoying my family.”
Tips and Resources for Your Health
How to Support Your Child with Sickle Cell Disease – While Supporting Yourself Too
Helping a child understand their sickle cell disease needs a thoughtful and age-appropriate approach. Learn tips for having these discussions, as well as how to take care of yourself while caring for a child with SCD.
Your Path to Parenthood: Understanding Genetic Testing and Your Reproductive Choices
Considering having a child when you have sickle cell disease can be scary. Genetic testing and reproductive options can help you take control of your journey to parenthood and avoid passing down SCD.
They’ll Be There for You: Talking to Your Friends About Sickle Cell Disease
It can be difficult to talk to your friends about what SCD is and how it affects you, but it's important to help them understand. Read our tips on what to say and things to keep in mind.
How to Talk to Your Child’s Teacher about Sickle Cell Disease
If your child has sickle cell disease, talking to their teacher is very important. It helps make sure your child gets the support they need at school, which will improve their learning and general wellbeing.
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“People come to BMC from all of the world to seek care for sickle cell disease,” she says. “Beyond the medical treatment and the clinical trials, they tailor a plan to assist you in having a life apart from dealing with illness." Cloret CarlHear more from Cloret