These episodes feature voices from the global sickle cell community, speaking in their own words about issues that affect their lives. It’s the latest look at inspirational individuals who won’t let the disease define their potential.
Dr. Kumar, a global health physician and photographer, is sharing images and stories of challenge and inspiration from around the globe to raise awareness for sickle cell disease and help change how the world sees it. You’ll see how people with the condition overcome challenges, what gives them hope, and what keeps them motivated.
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Dreamsickle Kids Foundation is the 1st Sickle Cell Organization in Nevada. Created in 2018 by mother and Executive Director Gina Glass. Gina witnessed firsthand the lack of knowledge and resources for people affected with Sickle Cell in Nevada. From her personal experience, Dreamsickle Kids was birthed. The purpose of the organization is to increase awareness, celebrate, educate and support families impacted by Sickle Cell Disease and now all Rare Diseases in Nevada, while also educating medical providers and the community on the effects of this debilitating disease.
Dreamsickle Kids partners with many organizations and individuals to elevate Sickle Cell Awareness in the state of Nevada and across the United States. Being the pioneer of advocacy for this rare disease in Nevada, Dreamsickle Kids has been tasked with bringing more information and awareness to Nevada to ensure that the Silver State accounts for the needs of all of its citizens, including the small Sickle Cell population.
Official website
Georgene’ Glass is the founder and Executive Director of Dreamsickle Kids Foundation, Inc, the first Sickle Cell Disease (SCD) organization in the state of Nevada.
Since 2018, the organization has led Sickle Cell support and advocacy in Nevada contributing to the state’s first Sickle Cell bill AB254 which has allowed for better access to medications specifically made for SCD and a state registry to obtain an accurate count of the number of patients in Nevada affected with SCD.
Georgene’ also serves as a Vice Chair of the Nevada Rare Disease Advisory Council created in 2019. As a mother of a child with SCD, Georgene’ has made increasing SCD awareness and support in the state of Nevada a personal mission. With SCD being one of the 7,000 Rare Diseases, in 2020 Dreamsickle Kids Foundation, expanded its support and efforts to those in the state that may suffer from any Rare Disease.
Online profile
September is National Sickle Cell Awareness Month, designated by Congress to help focus attention on the need for research and treatment of sickle cell disease. Learn more about improving and standardizing care for sickle patient visits in the emergency department as you listen to this frank discussion with Dr. Caroline Freiermuth.
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• Negative ED experiences in the past may make them guarded or mistrustful.
• Pain can make anyone irritable, impatient, or upset.
• Empathetic nonverbal communication is essential (eye contact, facial expressions, gestures).
• Be patient when asking questions; it is often difficult to speak when in severe pain.
• Assign an emergent priority ( e.g., ESI level 2).
• Severe pain that cannot be managed in the waiting room.
• High-risk situation that needs rapid evaluation for other serious complications.
• Increase level of concern if the pain is not similar to prior episodes or new symptoms are present.
• Patients with more than 3 admissions/years for sickle cell pain are at increased risk of death.
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