chronic illness management

Sickle Cell Disease (and other Hemoglobinopathies)

Artist: Hertz Nazaire

Sickle cell disease (sickle cell anemia, sickle hemoglobin C disease, sickle hemoglobin D disease, sickle hemoglobin E disease, and sickle beta thalassemia) is a group of hereditary disorders that affect the red blood cells. Two genes for the sickle hemoglobin must be inherited from one's parents in order to have the disease. A person who receives a gene for sickle cell disease from one parent and a normal gene from the other has a condition called "sickle cell trait." Sickle cell trait produces no symptoms or problems for most people. Sickle cell disease can neither be contracted nor passed on to another person. The severity of sickle cell disease varies tremendously. Some people with sickle cell disease lead lives that are nearly normal. Others are less fortunate, and can suffer from a variety of complications. Sickle cell disease and other hemoglobinopathies are present in all population groups but are more prevalent in persons of African, Mediterranean, Asian, Southeast Asian, Caribbean, and South and Central American origins. In California, the incidence of sickle cell disease is about 1 per 4,400.

In Southern California, if you are an adult with sickle cell disease or a parent of a child with sickle cell disease, there are services available. If you are a parent, please contact the Sickle Cell Disease Foundation of California (310-693-0247) for more information and support. If you are an adult with sickle cell disease, here at Cayenne Wellness Center, we have several support group locations (Glendale, Culver City, and Oxnard). Call us at 818 377 5120 for more information. We now have an adolescent/teen support group for those diagnosed with sickle cell disease, diabetes or other chronic illness. Call us at 818 377 5120 for more information.

Support Group

Parents. A safe place to turn when you feel completely alone. Every year approximately 150 babies are born with sickle cell disease in California. This means that there are many people facing similar challenges and who can understand what you are going through. The support group for parents is provided by the Sickle Cell Disease Foundation of California. The SCDFC's Parent Support Group is just one way to meet other parents, share your experience and learn from others. The Parent Support Group allows parents of children with sickle cell disease to share the resources, successes, challenges and feelings that are unique to families of children with sickle cell disease. Call the Sickle Cell Disease Foundation of Califonia for more information at 310.693.0247 or visit their website at: www.scdfc.org.

Culver City location meets on the first Saturday of each month at 12:00 pm

Adults (aka Sickle Cell Support Group of Southern California).
You are not in this alone. There are others who understand what you are going through. Join us at one of the locations below. Come and socialize, meet new friends and educate yourself on the latest information in research, treatment, and alternative modalities.

Glendale location meets on the first Thursday of every month at 7 pm
Culver City location meets on the last Saturday of every month at 3 pm
Oxnard location meets on the first Saturday of every month at 3 pm

Adolescents. The support group for adolescents is a new group called SHOUT! This type of therapy for adolescents seems to work so well simply because adolescents are so incredibly group oriented. They do everything in groups from the time that they are very small. Children have always learned from each other. In fact, this is the best way that they seem to learn. Another reason that group therapy works so well for adolescents is that they are more likely to trust and rely on each other than they are to trust or rely on adults.

Glendale location meets on the 2nd and 4th Saturday of every month

Locations for Support Groups:

Glendale location:
Cayenne Wellness Center
208 South Louise Street
Glendale, CA 91201
818.377.5120
www.cayennewellness.org

Culver City location:
Sickle Cell Disease Foundation of California
6133 Bristol Parkway, #240
Culver City, CA 90230
310.693.0247
www.scdfc.org

Oxnard location:

Community Education

See our news/calendar page

Camp Crescent Moon - A specialized summer camp for children (8 - 14) with sickle cell disease. Each year nearly 100 children from Southern & Central California attend the nation's first week long summer camp of its kind. Since 1967, the Sickle Cell Disease Foundation of California has provided an outdoor camping program for children with sickle cell disease, who because of serious medical complications would not be able to attend traditional camps. Camp Crescent Moon allows campers to participate in a creative outdoor experience and provides growth and development for each camper. Contact The Sickle Cell Disease Foundation of California for more information (310.693.0247).

Counseling

Sickle Cell Trait counseling (Program coming soon!)

Individual counseling. Call us at 818 377 5120 to set up an appointment

Family counseling. Call us at 818 377 5120 to set up an appointment

Faces of Sickle Cell Disease Photo Project

An educational/informational photo exhibit that brings a face to the disease that will be exhibited in museums, libraries, book form and other media.

If you or a loved one is interested in participating, click here for more information.

Fees

support group - parents
(provided by the Sickle Cell Disease Foundation of CA)

no fee

support group - adults
(provided by the Sickle Cell Disease Foundation of CA)

no fee

support group (adolescents/SHOUT! Group)

$10/visit

community/education

tbd

counseling (sickle cell trait)

no fee

counseling (individual)

$135¹

counseling (family)

$150¹

Faces of SIckle Cell Disease Photo Project

no fee

¹sliding scale is available

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