Sickle cell disease is a group of inherited red blood cell disorders. Normal red blood cells are round like doughnuts, with the holes filled in, they are soft and slippery so they move through small blood vessels easily in the body to deliver oxygen. Sickled red blood cells don’t move through the body as easily because they become hard and sticky. When the sickled cells go through the small blood vessels, they clog the blood flow and may break apart. This can cause pain, tissue damage and a low blood count, or anemia.Sickle cell disease is a group of inherited red blood cell disorders. Normal red blood cells are round, soft, and flexible, enabling them to move easily through small blood vessels to deliver oxygen. In contrast, sickled red blood cells are hard and sticky, hindering their movement and causing them to clog blood flow and break apart. This results in pain, tissue damage, and anemia (low blood count)
Over the last two decades there have been more treatments available for persons living with SCD. There is an online decision aid availalble to help you learn about sickle cell disease, the available treatments and get help making the decision that is right for you and your family.Over the past two decades, significant advancements have been made in the treatment of Sickle Cell Disease (SCD). These advancements have resulted in a wider array of treatment options for individuals living with SCD, offering renewed hope and improved quality of life. To assist patients and their families in navigating these choices, an online decision aid has been developed. This valuable resource provides comprehensive information about sickle cell disease, including its symptoms, complications, and available treatment options. By presenting this information in an easily understandable format, the decision aid empowers individuals to make informed decisions about their care, in collaboration with their healthcare providers. The decision aid considers individual needs and preferences, ensuring that the chosen treatment plan aligns with the patient’s unique circumstances and goals.
The Living Well with Sickle Cell®, The Parent Handbook is a resource for parents and caregivers.
Written in a friendly, understandable method and using color-coded tabs for easy navigation, the comprehensive Parent Handbook contains critical information and resources for parents coping with this painful disease, including:
The annual White Coats connects families with lived experience share their stories with first-year medical students, many of whom have not yet learned about sickle cell, and some have never met anyone with sickle cell. Through this program, families share their journey, triumphs and trials with future physicians.
