Family Support

For individuals with Sickle Cell Anemia, leading a normal life requires the involvement and commitment of friends, family, employers, school teachers, principals, doctors and nurses in various cities and hospitals. It truly takes a village to battle this disease. People with sickle cell start to have signs of the disease during the first year of life, usually around five months of age. Symptoms and complications of sickle cell disease are different for each person and can range from mild to severe depending on the genotype. There is no single best treatment for all people with sickle cell – treatment options are different for each person depending on the symptoms. In addition to the physical symptoms, the reoccurring pain causes many patients emotional turbulence. Therefore, it is important make sure emotional and morale support are provided to those affected through support groups. Hina Patel Foundation (HPF) hosts support group meetings via pizza parties, family picnics, and one-on-one conversations over the phone. All of the sessions promote self-sufficiency by discussing various health complications, sharing information about new treatments, and providing nutritional guides. Our organization also visits those that are hospitalized to provide moral support, companionship, and often offer prayers for their rapid recovery.

Families battling with chronic debilitating diseases often face great financial burdens, including transportation costs and copayments associated with treatment. Sickle cell patients are no exception. The HPF Assistance Program is designed to alleviate some of these transportation costs for families.
We provide support to patient families in the form of gas cards and writing refund checks upon proof of receipt for parking, copayments and other transportation cost.

Education

HPF works diligently to provide an understanding of the pathophysiology of Sickle Cell Disease and recent advances in the diagnosis and treatment of acute and chronic complications to healthcare providers as well as to patient and their families. This understanding leads healthcare providers and patients to make better informed decisions as to the most effective level of care and maintenance for the disease. A primary objective is that healthcare providers, especially in Kern County, become more aware of the recommendations for health maintenance and screening for all patients with Sickle Cell Disease. Over the next few years, the aim is to provide optimal performance in clinical and emergency settings.


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