To find an HTC near you, go to the Centers for Disease Control and Prevention (CDC) website (www.cdc. gov/ncbddd/hemophilia/htc.html). For additional information contact HANDI, the National Hemophilia Foundation’s resource center, at 800.42.HANDI or handi@hemophilia.org.
n ARE MY FEELINGS NORMAL? WHAT CAN I DO ABOUT THEM? You have just been told your child has hemophilia. At first, you may want to wrap your arms around your child and not let go. Parents may feel shock, anger, fear, resentment, guilt, depression, panic, and confusion, to name a few. You’ll have questions: Will my child be healthy and have a normal life? How can I handle this? Even if a bleeding disorder runs in your family, the diagnosis and realization of it actually happening to your child can cause emotional stress. You cannot buy a book and learn everything about hemophilia overnight. It takes time. The feelings you are experiencing are legitimate and very real. Knowing what you can do to prevent and treat bleeds will empower you. Where do you start? Getting support from those who have been living with a bleeding disorder is a good first step. Understanding what lies ahead for your family and accepting that hemophilia is treatable is a step toward acceptance. Emotional overload is one way to describe how many parents feel when they bring their child home from the hospital. The most important thing to do upon diagnosis is to educate yourself. Make an appointment with the local HTC, read about hemophilia, contact your local hemophilia chapter, and ask your HTC for online resources. Sorting through the wealth of online information on hemophilia can be a daunting task. Your HTC can help you figure out what’s worth reading and what’s a waste of time. Once you choose an HTC, the staff can put you in contact with other parents of children living with hemophilia. There is a network of moms and dads who understand what you are going through and are available to help. You will not have all of the answers at once! It takes time. As a mother, father, or caretaker, you may wonder how you will manage your new role. You may need to learn to infuse factor intravenously or give subcutaneous shots. Parents can have a whirlwind of emotions, such as sadness, hurt, and anger at the diagnosis of hemophilia. Joe Caronna, whose son has hemophilia, writes that parents often may have different opinions on how to raise their child. One parent, usually the mother, is the protector. The other parent, most often the father, is trying to prepare the child for the real world. A child needs both protection and the encouragement to explore. It is important to communicate with each other what activities are considered safe and allowable before a situation arises. One parent doesn’t need to be perceived as the “bad guy,” always saying no. Your goal is to teach your child to make smart choices on his or her own. This may prevent children from doing something without asking because they expect you to say no, but they will not always be under parental supervision. It is important to recognize that, at some point, the time will come when they need to decide for themselves if an activity is safe. Empowering your child to make smart, safe decisions early on will relieve some of your stress when your child is on his or her own. Someday, you may even feel confident enough to send your child to a camp for children with bleeding disorders. With today’s treatments, hemophilia is a manageable condition. If you grew up with hemophilia in your family, you may remember the wheelchairs, crutches, hospital stays, and the things in life that were missed out on. This was back when hemophilia care and treatments were not what they are today. Since then, the world of hemophilia has changed for the better.
11
Powered by FlippingBook