The Sick Cells Blog

Welcome to the Sick Cells blog! This is our online forum for discussing and sharing key information
about sickle cell disease and community activities.

Through this forum, you’ll hear from Sick Cells’ staff, board members and external partners,
and of course SCD community members.

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Kansas DURB Covers Gene Therapies for Sickle Cell Disease

This month, Sick Cells sat down with Kevin Wake to hear about the first Drug Utilization Review Board (DURB) meeting in Kansas to review the newly approved gene therapies, Casgevy (Vertex) and Lyfgenia (bluebird bio) for the treatment of Sickle Cell Disease.

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Enrico Laing & CoffeeRun

Sick Cells spoke with Rico, an SCD Warrior, founder of CoffeeRun and host of the annual CoffeRun 5k Sickle Cell Awareness Run.

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Exercise and Sickle Cell Trait: Understanding Risks and Embracing Wellness

In this blog, Sick Cells worked with the Kidney Cancer Association (KCA) and CJ Johnson Foundation to discuss the connection between Sickle Cell Trait (SCT), exercise, and a rare type of kidney cancer.

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Sickle Cell Legislation in the States

In 2022, Sick Cells conducted an analysis of existing state legislation specific to sickle cell disease. We also provide monthly updates on notable state bills. This blog highlights some of the state bills we have been covering and why they are important.

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Identifying Warrior Values in SCD Research

This blog will present the results of our recent project funded by the 2022 PCORI Engagement Award to highlight what matters most to SCD warriors and the community. This blog will also describe the importance of patient-reported outcomes and how they should be incorporated into SCD research.

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Mental Health is Wealth

Mental Health impacts almost every aspect of our lives, as it influences how we think and act. It also affects decision-making processes, how we address stressful situations and how we relate to others. This blog will share stories of warriors and their experience dealing with mental health challenges. 

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Sharing Your Story on the Hill

Storytelling is a powerful advocacy tool that provides a platform for the SCD community to express concern over health challenges. This blog shares experiences of sickle cell disease advocates who have previously participated in Hill events, and highlights the immense value of advocacy through storytelling.

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Warrior Love

It’s February, and we are Feeling the Love at Sick Cells. For us, “Feeling the Love” goes beyond celebrating Valentine’s day. It is also a time to reflect on the love we share with one another. The love we receive from our family, friends, romantic partners, etc., brings comfort and emotional and physical safety; for SCD Warriors, that feeling is unmatched. This month we celebrate the people who continue to pour love into us every chance they get. This blog post highlights several voices from our Faces of SCD Storytelling series that have captured the power of love across the SCD community.

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Chelation Therapy with Eric Kirkwood

Sick Cells sat down with Eric Kirkwood, sickle cell warrior and advocate, to discuss his experience with chelation therapy and why it’s so important for those in the SCD community.

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Stop Assuming, a Conversation with Jas

Sick Cells recently sat down with Jas (pronouns she/her/he/him/they/them)–a sickle cell warrior who is a member of the LGBTQ community–about her experience living with sickle cell disease, what she’d like to see more from her community and what gives her hope for the future. Thank you, Jas, for sharing your story. 

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Lessons From the Past: COVID-19 & the 1918 Flu

Science often looks to the future: finding the next cure, creating the next vaccine, and predicting the next outbreak. However, looking back in history can sometimes be just as useful. In this blog, we’ll explore the similarities and differences between the 1918 Flu and COVID-19. 

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It’s Your Health Journey: Self-Advocacy in the ER

Sick Cells spoke with Jemela Williams, a sickle cell warrior, about the importance of self-advocacy and how she helps herself and fellow community members advocate for themselves in tough situations. 

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