n HOW CAN I HELP MY CHILD? Teach your child about hemophilia using words and teaching methods that fit their age and stage of development. Use positive words and phrases about hemophilia and its treatment. Allow your child to share their thoughts and feelings about having hemophilia without judgment. Try to control how you express negative emotions when dealing with the challenges of raising a child with hemophilia. Because it is a genetic condition, many parents feel guilty, thinking that they gave the disorder to their child. Expressing this guilt to your child will affect their self-esteem. Find support to help you cope with negative emotions so that you will be better able to meet your child’s needs. You can help your child cope with factor infusions by making sure they are hydrated and warm prior to receiving the infusion. When possible, give your child realistic choices and duties before, during, and after the infusions. Your child will begin to learn and take control of their treatment and will develop self- esteem in the process. Try to allow your child to participate in as many normal childhood activities as possible. When possible, provide protective equipment for them to limit injuries and bleeding during their favorite activities. Use positive words to help your child focus on what they can do instead of what is not safe. Find and participate in local hemophilia support groups and activities. There may be a local chapter of the National Hemophilia Foundation or a First Step group. This will give you and your child the opportunity to meet others affected by hemophilia. Your child will realize that they are not alone in having hemophilia, which may help them develop coping skills for living with the condition. n CAN MY CHILD GO TO SCHOOL? Yes! Your child should go to school as regularly as possible. Sometimes they may need to use crutches or a wheelchair while at school to rest an injured body part. Work with your child’s school to obtain an individualized healthcare plan (504 plan) to ensure all their educational needs are met. Ask for help from the HTC staff to provide education for the school staff about hemophilia. They also can assist with challenges encountered in dealing with the school staff. HTC doctors, nurses, and social workers can provide support to ensure that your child gets the best possible education.
n WHERE CAN I GET MORE INFORMATION? Resources
CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) The CDC helps support HTCs. The network finds ways to treat and prevent complications from bleeding disorders. The CDC has established the Universal Data Collection Project to monitor blood safety and to conduct research. Basic Concepts of Hemophilia: A Self Study and Planning Workbook for Families with a New Diagnosis of Hemophilia : www.cdc.gov/ncbddd/hemophilia/documents/providerguide.pdf
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