This conversation will focus on sharing our experiences with some of the complications of sickle cell disease. What are the prevalent complications? How can we recognize them and what do we do about it? Patients and caregivers will share their experiences.
Dr. Lydia Pecker
Dr. Adrienne Scott
The importance of seeing an eye doctor every year is discussed along with how Sickle Cell effects a warrior’s eyes. An in-depth look at Sickle Retinopathy and what it is.
The ins and out of priapism, what it is, how it affects the male, what can you do to help, and when you should seek medical attention.
Dr. Shannon Phillips
New educational initiative to enhance transcranial doppler (TCD) implementation: results from the DISPLACE study.
Dr. James Eckman
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: