Comprehensive Sickle Cell Disease Treatment Center
Our approach is to create a true medical home where patients and their families can feel seen and heard. We understand the complexities of sickle cell disease and our comprehensive team has the experience to care for you and your family.
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Explore the Comprehensive Sickle Cell Disease Treatment Center
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.
What Is Sickle Cell Disease?
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.
Innovative Treatment Options
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.
The Mass General Difference
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.
National Alliance of Sickle Cell Centers
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.
Meet the Team
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.
"We know that sickle cell can touch so many aspects of your life and we want the resources that you need to be only a phone call away. We want to be your advocates. We want to be here for you and your family."
Introduction: Lisa Leung-Tat, yoga and meditation instructor, defines mindfulness and meditation and describes how cultivating both can be helpful in times of stress as a tool for well-being for sickle cell patients.
Session 1: Lisa Leung-Tat provides a brief guided session giving sickle cell patients clear instructions for body-mind awareness using the breath as an anchor.
Session 2: Lisa Leung-Tat guides a meditation for sickle cell patients focused on further exploring practice by deepening the breath and using the rhythm of the breath to calm the mind.
Session 3: Lisa Leung-Tat leads a meditation for sickle cell patients and explains how silence and stillness in body and mind can create space in the mind which leads to clarity.
Session 4: Lisa Leung-Tat leads a meditation for sickle cell patients which focuses on deepening the breath practice. Using deep full breaths creates an anchor which leads to greater calm in the mind and relaxes the body.
Guided Meditation: This guided meditation with Lisa Leung-Tat offers a breath meditation and body scan to help relax tension in the body.
Building Bridges with the Greater Boston Community
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.
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.
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Mass General has received a revolutionary gift of $50 million from Robert K. Kraft and The Kraft Family Foundation to address healthcare disparities caused by race, ethnicity, geography, and economic status.
Across the nation, the medical community, long plagued by persistent health disparities, is acknowledging structural racism as a public health crisis...
Comprehensive Sickle Cell Disease Treatment Center
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.