Education, Counseling, Family Support, and Programs for Californians with Sickle Cell Disease
From healthcare to humancare
SCDF understands that SCD isn't just a health condition — it’s a human condition. One that requires true connection and a holistic lens that takes into account how the disease plays into our sense of self and belonging, affects different areas of life, and relates to larger societal structures. SCDF represents the future of what “care” really means by transcending the borders traditionally drawn by our healthcare system.
OUR MISSION
To build a world where individuals with Sickle Cell Disease get the care and compassion they deserve.
Expanding Sickle Cell Disease Care throughout California
As part of the Networking California for Sickle Cell Care Initiative, (and with the help of a $15 million grant from the governor) we are helping to expand the network of adult clinics for SCD throughout the state.
Free Sickle Cell Disease services in Southern California
We provide education and programming throughout Southern California for infants, children, teens, and adults with Sickle Cell Disease.
Psychosocial Support for People with Sickle Cell Disease
FREE counseling services are available at the Sickle Cell Disease Foundation
Having sickle cell disease is hard. It impacts the person with sickle cell disease and their loved ones. Having sickle cell disease affects the physical, social, emotional, and spiritual parts of life. This is the psychosocial effect of sickle cell disease.
If you need help, we have experts available who understand how sickle cell disease affects a person and their loved ones.
It is normal to need some extra help when you’re dealing with sickle cell disease. But many people who could benefit from support services don't use them because they don’t know about them or don’t know how to find them.
One-on-one counseling might be a good option if your feelings are keeping you from doing your normal activities. In counseling, you can talk with a trained professional about your worries and concerns. Having sickle cell disease or having a loved one with sickle cell disease is a different experience for each person. Individual counseling gives you a chance to focus on your own feelings and concerns.
Counseling may also be helpful for children (ages 8+) or caregivers of a person with sickle cell disease.
Psychosocial problems may include:
Trouble coping with having sickle cell disease
Feeling apart from family and friends
Changes in how a family gets along and works together
Problems with making decisions
Concern about not being able to do what you enjoy
Problems working or going back to work
Worries about money
Concerns about school
Stress about making choices about care
Problems talking about how you are feeling
Grief
Fear of sickle cell pain coming at any time
Fear of death and dying
Concerns about being able to provide good care for a person with sickle cell disease
One-on-one counseling can help you:
Focus on what you are most bothered by
Learn ways to cope with your sickle cell disease and changes in your life
Deal with symptoms from your sickle cell disease and treatment
Figure out how to handle changes in the way the disease presents itself
Figure out how best to deal with family issues
Deal with strong feelings
SCDF has been a part of our lives for over 20 years.
“We continue to seek information from SCDF as pioneers discover medical breakthroughs to enhance the lives of the SC community. We are forever grateful for the advocacy, support, education, enrichment and the multitude of resources provided by SCDF.”
— Community Member
News & Updates
Head here for Community Resources as well as the latest news and research about Sickle Cell Disease.
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