California Sickle Cell Resources

08/13/2025

🌟 Partner Spotlight: Sickle Cell Disease Foundation (SCDF) 🌟

We're proud to be highlighting our community partners at SCDF, working together in many ways to uplift the impactful, community-focused work they lead in California. Founded in 1957, SCDF is the nation’s first nonprofit dedicated to serving individuals and families affected by sickle cell disease. Based in Southern California, SCDF reaches thousands each year through free programs, education, and support.

Their services include:
✨ Summer camps for children, teens, and young adults
🧠 Mental health counseling
🤝 Caregiver and adult support groups
📚 Health education
🩸 Blood drives
🍼 Newborn screening hemoglobin trait follow-up services

SCDF also serves as a lead agency for Networking California for Sickle Cell Care, a statewide initiative connecting community-based organizations and healthcare providers to improve access to quality care for adults living with .

💻 Learn more at www.scdfc.org

08/11/2025

🚨 The median age of death for people with sickle cell disease ( ) is less than 50 years old.

As complications pile up with age, specialized care often drops off after childhood, leaving many without the support they need most.

In this webinar, Dr. Emily E. Johnston (University of Alabama at Birmingham) and Dr. Oyebimpe O. Adesina (University of Washington) shared research on end-of-life care for SCD and why a palliative care model could improve quality of life and reduce unnecessary hospital visits.

📺 Watch this webinar & more on pain management, mental health, and care transitions for the SCD community at YouTube.com/.

*This webinar was previously recorded on July 1, 2020.

08/08/2025

🩸 Sickle Cell Trait ( ) occurs when a person inherits one sickle cell gene and one normal gene. Most carriers don't experience symptoms and live a normal lifespan, but knowing your status is important for family planning and awareness of rare health risks, like heat-related illness, certain eye injuries, and mild kidney issues.

In the US, newborn screening detects SCT at birth, but many people may not remember or may have never been told their results. You can ask your doctor for a simple blood test at any age to find out.

💡 Have you been tested? Knowing your status can help you make informed decisions and take steps to protect your health.

👉🏽 Check out our new SCD Glossary now live on our website (under "Project Materials") to learn more terms, all broken down in clear and simple language: https://trackingcalifornia.org/projects/sickle-cell .tab=0

📲 Share this post to spread in your community!

08/07/2025

🥦 Nutrition plays a powerful role in supporting sickle cell warriors.

Those with often have higher nutrient needs due to increased red blood cell turnover and inflammation. A diet rich in key nutrients and anti-inflammatory foods can help boost energy, support immunity, and reduce complications 💪🏾

This post highlights some important nutrients and examples of anti-inflammatory foods to include in your meals! Whether you’re living with SCD, caring for a loved one, or part of the community, these tips can support better health and quality of life 💚

📖 Learn more from the California Department of Public Health’s SCD Nutrition Handbook:
https://www.cdph.ca.gov/Programs/CFH/DGDS/Pages/nbs/SCHandbook_Nutrition.aspx

07/31/2025

🛏️ Here is a quick summary of our webinar on sleep disturbances in , posted on our YouTube channel earlier this week.

🎤 The session was led by Dr. Cecelia Valrie, Associate Professor at Virginia Commonwealth University, who shared the latest research on how sleep issues (like obstructive sleep apnea, insomnia, and periodic limb movements) affect sickle cell warriors. These challenges can lead to more pain, fatigue, inflammation, and difficulty with focus, mood, and academic performance.

📺 Head to our YouTube (YouTube.com/) to watch the full webinar, and 📲 share this post with someone who could benefit!

07/28/2025

🛏️ Did you know that approximately 43% of adults and 51% of children with sickle cell disease (SCD) experience obstructive sleep apnea (OSA)?
Sleep disturbances like OSA can increase the risk of pain crises, stroke, and other serious complications in people living with SCD.

In this webinar, Dr. Cecelia Valrie (Department of Psychology at Virginia Commonwealth University) explores the connection between SCD and sleep health. Learn how poor sleep quality affects day-to-day functioning, and what the latest research is uncovering about improving care and outcomes.

📺 Watch the full webinar and check out our other recorded webinars on mental health, pain management, and care transitions for the SCD community at YouTube.com/

*This webinar was previously recorded on July 30, 2024.

07/23/2025

New to sickle cell or want to brush up on key terms?

Let's start with the basics:🩸 What is sickle cell disease?

Sickle cell disease is an inherited blood disorder where red blood cells become sickle shaped. These cells break down faster and can block blood flow, leading to pain, infections, and serious health issues like anemia, stroke, and organ damage.

We’re excited to introduce our new SCD Glossary! A resource created to make terms easy to understand for Warriors, families, and community members.

📖 Visit our website to explore the full glossary and start learning today:https://trackingcalifornia.org/images/uploads/cascdc-glossary.pdf

👀💬 Know someone who could benefit from this resource? Share this post to help spread awareness and support our community.

07/21/2025

🩺 Did you know? About 75 to 100 newborns are diagnosed with each year in California thanks to newborn screening 👶🏽🩸

This simple test helps families connect to care early, giving babies the best chance at a healthy start in life 💖🌱

📢 Share this post to spread the word about the importance of early detection and equitable care for all communities 💬✨

07/16/2025

Summer heat can be tough on anyone, but especially for sickle cell warriors ☀️💧

High temperatures and dehydration can trigger pain crises, fatigue, and other serious complications for individuals with . That’s why it’s so important to take a few extra steps to stay safe this season.

We put together 3 quick and easy tips to help you or a loved one stay cool, hydrated, and feeling your best during these hot California months.

✅ Hydrate often
✅ Avoid peak heat hours
✅ Listen to your body

Share this with someone who could use a reminder, and let’s keep our communities safe and informed this summer!

07/14/2025

Students living with sickle cell disease (SCD) face unique challenges in school, challenges that were only intensified by the COVID-19 pandemic. In this powerful webinar, Kaitlin Murtagh and Trudy Tchume-Johnson from Children's Hospital of Philadelphia share how their psychosocial team created systems of support across the tri-state area to help students and caregivers navigate school-based barriers.

📺 Watch the full webinar here: https://www.youtube.com/watch?v=EgY-Y0PhEU0
🗓 This webinar was previously recorded on February 15, 2022

🔗 Stay connected with CA SCDC for more insights, data, and resources that support the SCD community: https://linktr.ee/ca_scdc

Students living with sickle cell disease (SCD) are disproportionately affected by inequities in education caused by direct and indirect disease-related facto...

07/11/2025

🤝 Partner Spotlight: Cayenne Wellness Center and Children's Foundation

For over 25 years, Cayenne Wellness has been a leading force in improving the lives of Californians living with Sickle Cell Disease (SCD). Their work is deeply rooted in community, equity, and advocacy.

Cayenne Wellness actively addresses the unique needs of individuals and families impacted by SCD through a wide range of services, including:
🧠 Free mental health counseling
🤝 Statewide support groups
🚸 Patient transition programs that help young adults move confidently from pediatric to adult care
🎓 School workshops that equip educators and school nurses to support students with SCD
💡 Virtual workshops, annual educational seminars, and provider trainings led by top medical experts
🧬 Their STAC-California.org initiative, which raises vital awareness about sickle cell trait

They also support families by providing emergency transportation, respite child care during medical crises, and financial assistance for co-pays, empowering patients to become strong advocates for themselves within the healthcare system ❤️

Each year, Cayenne Wellness hosts the Sickle Cell Disease Educational Summit, bringing together patients, providers, and advocates for a week of powerful connection and learning.
🗓️ This year’s summit is happening September 17–21, 2025
📍 Hybrid format – join in person in San Jose or attend virtually from anywhere!

We’re proud to spotlight Cayenne Wellness as one of our community partners, and we’re honored to support their work in building a more equitable future for people living with SCD across California!

🔗 Learn more at https://cayennewellness.org/

07/08/2025

👋 It’s been a while since we’ve introduced ourselves and we’ve seen some new faces around here, so hello and welcome!

We’re the California Sickle Cell Data Collection (CA SCDC) Program, part of Tracking California at the Public Health Institute, and we’re here to connect the dots between data, equity, and real lives. Our goal is to improve care, resources, and outcomes for people living with sickle cell disease (SCD) across California through surveillance and storytelling.

Here’s what you can expect from our page:
🧠 Make public health/SCD information easy to understand and share
🤝 Spotlight partners, community, and advocates
📊 Share data that drives action
❤️ Uplift the lived experience behind the numbers

Whether you’re a longtime follower, new supporter, or part of our extended UCSF Benioff Children’s Hospital community, we’re so glad you’re here 💙