Siblings

Being a brother or sister is an important job. Whether you’re the one who has the bleeding disorder or you’re the one who doesn’t, siblings often understand each other the best. While you may be different in many ways, sharing family experiences creates memories, helps you develop skills for learning to live with others, and strengthens bonds that last a lifetime.

If your brother or sister has a bleeding disorder, you may have both good and bad feelings about it. That’s okay! Sometimes you’ll get scared if they’re hurting and you want to protect them. Sometimes you’ll feel upset if they are sick or in the hospital. But, you may get angry, too, because you have to do their chores for a while. You may get mad because your mom and dad seem to pay more attention to them. You should know that all these feelings are normal.

Brothers and sisters are great partners. They can help each other achieve their goals and dreams. So…

• Treat your brother or sister with a bleeding disorder just like any sibling. You may be the only one who doesn’t think of your brother or sister as different or special. Your sibling probably really likes being treated like every other kid.
• Support each other’s interests. Try new activities together. Attend each other’s school events. Go to a local hemophilia chapter event together.
• Help each other. Pitch in with chores around the house, or even help gather supplies for your sibling’s treatment.

Here are some things you can do to learn more about your brother’s or sister’s bleeding disorder and participate in his or her care:

• Tag along. Ask to go along to your brother’s or sister’s Hemophilia Treatment Center (HTC) appointments.
  • You’ll get a better understanding of what kind of treatment your sibling needs.
• Ask questions! Your mom or dad and the people at the HTC or local hemophilia chapter can give you lots of information about bleeding disorders.
  • Ask for some brochures, Web sites, or other resources that can answer your questions. Some of these are specially designed for brothers and sisters of people with bleeding disorders.
  • You’ll learn what kind of disorder your brother/sister has, how it affects his/her body, and how it makes your sibling feel.
  • Write down your questions so you’ll remember the next time you talk to your mother or father or your brother’s/sister’s health care team.
• Express yourself. Talk to your parents about all the good and bad feelings you may have about your sibling’s bleeding disorder.
  • If you find it hard to talk about certain things, try writing your feelings down in a journal or drawing a picture in a sketchbook.
• Help out. Offer to help in your sibling’s treatment routine.
  • You can help organize the treatment supplies, mix the factor, or even pick out fun adhesive bandages.
• Go to camp! There are lots of camps where siblings get to join in on the fun and learn more about bleeding disorders.
  • You’ll get to meet brothers and sisters of other kids with bleeding disorders, learn about their experiences, and share your own.
• Be proud of yourself. You’re probably good at sports, art, playing a musical instrument, or setting up science experiments. Remember that you have interests and talents that make you special, too.

Here are some common questions and concerns of brothers and sisters of people with bleeding disorders:

• Will I get a bleeding disorder too?
  You can’t catch a bleeding disorder like a cold. It isn’t caused by a germ or a virus. A bleeding disorder is genetic, which means that your brother or sister was born with it.
• I got in a fight with my brother the other day and said some mean things. Later he had to go to the hospital for a bleed. Is it my fault?
  Nothing you say can cause a bleed. But, remember to play safely with your sibling who has a bleeding disorder. You may not mean to hurt your brother or sister, but accidents can happen easily when playing gets too rough.
• My parents spend more time with my brother/sister going to the clinic, school, or just talking about stuff. I sometimes feel angry with my brother/sister and feel like my parents care more about him/her than they do me.
  Share your feelings with your parents. Talking with them can clear the air. They may not realize how you are feeling. Your brother or sister may wish he/she didn’t have to spend so much time with your parents. Try going with them to a clinic appointment to see what happens or just to keep your sibling company. Get in touch with a local hemophilia chapter. Many have special programs for kids like you. You can talk with them and other kids about their experiences with a brother or sister who has a bleeding disorder.
• Sometimes I want to just blend into the walls so no one asks me to do anything. Other times I feel like I have to do everything right: get good grades, try out for sports, and help out at home, all to make up for my brother’s/sister’s bleeding disorder.
  It’s important to do your best in school and in the activities you enjoy. It’s also important to be a team player and pitch in when needed. But doing something just to make up for what someone else can’t do doesn’t help you or your sibling. Discover your interests and follow your own dreams to reach your goals. Talk with your parents about how you feel. You may find your parents would prefer you do less and enjoy your activities more.

A Special Word for Sisters of Boys With Hemophilia

Bleeding disorders are genetic, which means they are passed on through a person’s DNA or genes. As the sister of a brother who has hemophilia, it’s important to find out if you’re a hemophilia carrier. Carrier is the term used for a woman who can pass the genes that cause hemophilia to her children. A woman who is a carrier has a 25% chance (one in four) of having a son with hemophilia each time she is pregnant.

Sometimes, women who are hemophilia carriers have the symptoms of hemophilia themselves. For example, they can have prolonged bleeding after tooth extractions, surgery, and childbirth. There are tests to determine if you carry the gene that causes hemophilia. Talk to your parents about the right time to get tested and remember that being a carrier doesn’t change who you are or your ability to have a family. Learn about the genetics of a bleeding disorder. Having information and being informed will help you make good decisions about your health and your future.