Mass General Hospital
55 Fruit Street
Boston,
MA
02114
Phone: 617-643-9042
Sickle cell disease (SCD) touches so many aspects of life both in and out of the hospital. Our approach is to create a true medical home where patients and their families can feel seen and heard. We understand the complexities of the disease and our comprehensive team has the experience to care for you and your family. We are deeply committed to you and want to advocate for you within the healthcare system. We have the abundant resources of a general hospital to care for you and to help you manage your disease and its symptoms.
Our team is adept at the management of adults with sickle cell disease and are readily available to help you transition from pediatric to adult care. You are the most important member of the medical team and you’ll be joined by our group of experts to develop and coordinate a comprehensive treatment plan for you.
Sickle cell disease is an inherited, life-threatening blood disorder, affecting approximately 100,000 Americans. In the United States alone, 4,000-5,000 pregnancies annually result in some variant of sickle cell disease. The disease is most commonly seen in the black and brown population where the gene frequency for sickle hemoglobin (HbS) is 4%. As a result of newborn screening, immunizations, treatment of infections, disease modifying agents like hydroxyurea, and improved supportive care, the survivability has markedly improved over the last ten years.
The greatest impact on the management of sickle cell disease comes from the establishment of a multidisciplinary care team that can meet patients where they are and provide them with the resources needed to live healthy lives. With new therapies on the horizon, we have good reason to be hopeful about the future.
Our Center has created a unique model where our patients are seen jointly by both hematologists with specialized expertise and primary care providers because we know that sickle cell disease touches all aspects of health. We are equipped with the latest disease modifying agents for sickle cell disease including voxelotor, L-Glutamine, and crizanlizumab. We have partnered with our colleagues in stem cell therapy to provide expertise in stem cell transplant. We strive to bring the latest medical treatments and clinical trials to our Center so that our patients can have access to the most innovative approach to treating their disease.
In addition to medical therapies, all of our patients have access to integrative modalities including acupuncture, massage therapy, yoga, and medication. We have a dedicated sickle cell disease chaplain for spiritual care and if you need to be admitted to the hospital, our unique partnership with palliative care allows us to holistically treat your pain and symptoms.
Sickle cell disease is best managed through a care model that integrates multiple disciplines to help patients tackle the many facets of an illness that spans a lifetime. Attention to the physical, psychosocial, and financial impacts of the disease are key to providing good care for patients and their families. At Mass General, we have the abundant resources to care for you and to help you manage your disease and its symptoms.
The Mass General Comprehensive Sickle Cell Disease Treatment Center is proud to be a member of the National Alliance of Sickle Cell Centers (NASCC). NASCC is committed to providing support, education, and other resources to sickle cell centers across America in order to enhance the quality of patient care and improve outcomes for patients and the centers alike.
Sickle cell disease can impact many aspects of your health, and we provide patients and their families with a multidisciplinary team of experts who are passionate about providing the best possible care from childhood to adulthood, including a dedicated social worker, a dedicated nurse navigator, infusion space for treatments, the latest treatments, and access to community resources.
Learn more about Sickle Cell Disease in this special issue of the Bay State Banner.
Dedicated to advocating for & providing support services to patients and families.
We connect, educate, and empower the sickle cell disease community of care.
A regional cooperative group of New England Pediatric Hematology programs devoted to SCD.
Learn about the Pediatric Blood Disorders Program at Mass General.
Mass General provides comprehensive primary care and medical specialty services.
In our effort to learn from and partner with the sickle cell disease community in Boston, we partner with the Greater Boston Sickle Cell Disease Association and the New England Sickle Cell Consortium. We work with our colleagues at other sickle cell programs throughout the commonwealth and transition pediatric patients from both Mass General for Children and Boston Children’s Hospital.
New Fitness and Nutrition Program
Mass General is proud to offer our SCD patients the opportunity to be a part of our innovative new fitness and nutrition program. Jen Miramontes, Personal Trainer and Medical Exercise Specialist, provides personalized fitness programs specific to our participating patients with SCD. With the launch of this new program, Mass General seeks to provide equitable and fair access to every aspect of health and wellness for our SCD patients.
Supporting Innovation for People With Sickle Cell Disease
With support from The Vertex Foundation, the Mass General Comprehensive Sickle Cell Disease Treatment Center will expand its innovative, multidisciplinary approach to treating a disease that historically has not received the attention it deserves. Read more about how The Vertex Foundation's gift will help the Center establish a dedicated athletic training program and a first-of-its-kind survivorship program.
Importance Of Black Blood Donors For Patients With Sickle Cell Disease
Dr. Sharl Azar, Director of the Comprehensive Sickle Cell Disease Treatment Center at Mass General Hospital, spoke with Dr. Mallika Marshall at WBZ Boston about the importance of getting blood donations from Black Americans. “When I think about my patients living with sickle cell disease, they are going to be needing blood transfusions repeatedly over the course of their lifetime. It is important for us to be able to match that blood to them as closely as possible,” said Dr. Azar. Watch the video from WBZ Boston here.
Bay State Banner: Be Healthy Winter 2022 Edition
Learn more about Sickle Cell Disease in this special issue of Be Healthy from the Bay State Banner. The issue features interviews with Mass General's Sharl Azar, MD and David Sykes, MD, PhD, and includes articles about living longer with sickle cell disease, transitioning to adult care, patient stories, recipes, and much more.
Ellen Silvius, RN awarded inaugural Department of Medicine Equity Award
Congratulations to Ellen Silvius, RN, nurse navigator for the Comprehensive Sickle Cell Disease Treatment Center, who was awarded an inaugural Department of Medicine (DOM) Equity Award. These awards recognize DOM members who have exemplified the Department's commitment to equity by going above and beyond to: combat bias or discrimination; respond to the social needs of patients or promote equity for patients or coworkers on the basis of race, ethnicity, sexual orientation, gender identity, age, disability, religion, or national origin.
Ellen is a tireless advocate for the patients she serves and goes above and beyond to help patients receive the care and resources they need. She has exemplified a passion for helping address the social needs of the patients she serves including helping patients navigate issues of transportation and food insecurity. Congrats, Ellen!
"I learned the most about medicine from my dad’s death"
In a powerful piece paying tribute to his father, Gleeson Rebello, MD, pediatric orthopaedic surgeon and Sickle Cell Disease Treatment Center team member, shares lessons that his father’s death taught him about the medical field and how personal loss has made him a more thoughtful physician. Read his story.
Our approach is to create a true medical home where patients and their families can feel seen and heard. We understand the complexities of the disease and our comprehensive team has the experience to care for you and your family.
