TRAINING and EDUCATION
Patient Education
Patient Resources from the Children ’ s Sickle Cell Foundation
The Children ’ s Sickle Cell Foundation , Inc ., provides quality programs and services for children with SCD and their families to help them face the educational , social , and economic challenges caused by the disease . They provide educational support services for children with SCD , including educational advocacy , schoolwork retrieval while the child is absent from school , and loaner laptop computers to prevent children from falling behind when their illness interrupts their education . Both family and support programs are part of the Foundation ’ s core values .
The following services are available to help families who have a child living with SCD :
• Family Support Programs cscfkids . org / programs-andservices / family-support
• Educational Support Programs cscfkids . org / programs-and-services / educational-support-program
• Transitioning to Adulthood cscfkids . org / living-with-sicklecell / transitioning-to-adulthood
How Is Sickle Cell Disease Treated ?
Every person with SCD should be under the care of a medical team that understands the disease . It is recommended that all newborn babies with SCD be treated with an antibiotic ( penicillin ) to prevent serious infections . All of the childhood immunizations should be given , as well as the pneumococcal vaccine . Parents must also know how to check for a fever because this signals the need for a quick medical check-up for a possible serious infection .
Patients and families will want to be mindful of the following conditions that may require an urgent medical evaluation :
• fever ( 101 ° F or higher )
• chest pain
• sudden , unusual headache
• shortness of breath
• increasing tiredness
• abdominal swelling
• any sudden weakness or loss of feeling
• pain that will not go away with home treatment
• priapism ( painful erection that will not go away )
• sudden vision change
Living with Sickle Cell Disease
Living a healthy lifestyle is important for people with SCD . Minor illnesses may quickly turn into a medical emergency , so it is important for the person with SCD and his or her family members to keep a close eye on health status . People with SCD can live full lives and enjoy most of the activities that others do . The following tips are guidelines for living a safe and healthy lifestyle with SCD :
• Find quality medical care : Managing SCD takes a comprehensive team of doctors , nurses , and other health-care professionals working in collaboration . Every person with SCD should have a hematologist and a primary-care physician who knows the person ’ s detailed medical history .
• Make and keep doctor ’ s appointments : Consistent health check-ups with a primary-care physician can help prevent serious health problems . Every person with SCD should talk about any problems or pain he or she is experiencing .
• Prevent infections : Keep up-to-date on all vaccines , including the flu vaccine , pneumococcal vaccine , and any others recommended by a doctor . Washing hands with soap and clean water is a simple and essential way to prevent infections .
• Take all medications , including penicillin , as prescribed . Do not miss doses , and do not take more than recommended .
• Stay hydrated and eat healthy foods : It is critical that people with SCD stay hydrated . Eating balanced meals and making healthy choices are important . Avoiding food bacteria is also important ; certain uncooked foods can carry harmful bacteria . Be sure to wash anything that comes into contact with contaminated food .
• Avoid extreme temperatures : Maintaining a balanced body temperature is very important , as patients with SCD have increased sensitivity to temperature extremes . Be sure to wear layers to adapt to changing temperatures .
• Avoid reptiles : The harmful Salmonella bacteria is present in some reptiles and is especially harmful to people with SCD . Children and adults should stay away from snakes , lizards , and turtles .
Cut out and give to a patient
56 ASH Clinical News November 2016