September 2024

People living with Sickle Cell Disease (SCD) are more than just their disease. Californians living with SCD and their caregivers have diverse lives.

In Hope for the Journey, our photoblog details the experiences, challenges, and triumphs of those individuals.

We hope that this photoblog serves as a tool to start conversations, inform actions and behaviors that improve health, and build connections.

View the photoblog here

Christen, El Iyah, and the Brown Family

View Christen, El Iyah, and the Brown family's story here

The Brown family lives on the country side in Solano County, in a ranch style home on about 20 acres of land, mostly hills, cattle, and horses.

El Iyah Brown, was diagnosed with sickle cell at birth. Christen, El Iyah's father, shares some reflections of caring for his son:

"Eating healthy is expensive, but being sick isn't cost effective long term.

The environment where we live plays a significant role in our son's wellness journey.

Our family dedicates time to gardening, planting, and fostering a deep connection to the earth, which is vital to our well-being."

Crystal and Josilyn Derrick

Crystal Derrick has a daughter, age 13, who has Sickle Cell disease.

Crystal has worked in healthcare since high school and plays a dual role as an advocate for Josilyn's medical care as well as an advocate as Josilyn's mother:

"Miss Josilyn is a dainty young woman, not a lot of meat on her bones, very thin...but she's strong - has strong bones and a strong will.

What's really changed my perspective and direction, is joining Cayenne Wellness.

I've had a little bit more guidance, more insight, because there's a couple more sets of eyes, a couple more individuals with different brains and insights."

View Crystal and Josilyn Derrick's story here

Ms. Wanda Williams

View Ms. Wanda Williams' story here

Ms. Wanda Williams is 74 years old and lives in Hayward, California.

She did not find out that she actually had sickle cell disease until she was 19 years old:

"After my son was born, I had a physician/OBGYN that told me what I had - but prior to that, when I'd have a pain crisis, my family would massage my legs, arms, abdominal area or whatever area I was having pain.

After that, I made sure I always had a coat in the car - didn't do things that would cause me to become ill. Go rest, eat, make sure to start your day by drinking water.

Most of the time, if I would intervene early on, I could avert a pain crisis."

Making connections

A key theme that came up during our interviews was connecting with others in the Sickle Cell community. We've compiled a list of those working and providing care for the Sickle Cell community and additional resources at the end of our photoblog.

View the "Connect with others" section and additional resources we've compiled here

Please share these stories with others!

We kindly ask that you share this email and Hope for the Journey with others in your network who may be interested!

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The California SCDC program aims to improve access to healthcare, reduce health disparities, and increase awareness of the disease by providing data, conducting analyses, and communicating information to SCD partners throughout the state.

Stay tuned and feel free to send us questions and comments about our program here!

This work is funded by the Centers for Disease Control and Prevention, DD-23-0002 Sickle Cell Data Collection Program, Award Number NU58DD000039