This conversation will focus on the experiences of the Caregivers of Sickle Cell Warriors who are so important to the management of their day-to-day lives. What have they learned to make caring for their loved ones easier? How do they care for themselves to make sure they are healthy and available for their Warrior?
Chaundra White Cummings
Tips on surviving as a caregiver physically, mentally, and emotionally for a long period of time.
Carley Cole Cavins
Carley Cole-Cavins Adrienne Shapiro, Rae Blaylark, Vanessa Rhodes
Adrienne Shapiro personally experienced in raising a daughter with sickle cell. From birth to adulthood she discusses different experiences and feelings of raising a child with SCD.
Program Overview & Learning Objectives
This is an educational conference planned by, and for, individuals living with sickle cell disease, our caregivers, to address issues that are most relevant to the sickle cell community. Some of the latest research in sickle cell disease will be discussed as well as management of the most common complications including treatment options; gene therapy, transplant, transfusion, and new therapeutic drugs available (or being researched) for sickle cell disease. Educational content will be provided in the form of pre-recorded, video content. Sickle cell stakeholder groups are then invited to engage in Community Conversations to discuss the top prioritized subject matter themes. The recorded educational content will serve to provide an overview of a wide array of topics related to the subject matter of the Community Conversation. Healthcare providers, industry, and other stakeholders are invited to join patients and caregivers in discussions that shape sickle cell research, education, policy, advocacy, and awareness. Patients and caregivers are the true experts of our own bodies, perceptions, and experiences. We are turning the table and invite all others to come and learn from us – Sickle Cell Citizen Scientists.
The primary audience is consumers with sickle cell disease, adults and children, their caregivers, and sickle cell advocates.
After completing this course, participants should be able to: