If your child has hemophilia and inhibitors, you may feel sorry for him. You may even feel guilty if you find you were the carrier of the hemophilia gene. These are quite normal reactions. But it is important that you learn to accept your child's condition.
There are many people ready to help you. All of the following people can play a role in helping you with the support you need.
Hemophilia Treatment Centers
If there is a hemophilia treatment center near you, get to know the staff. Even though you probably won't need to contact them very often, it helps to have a familiar person to talk to when you have concerns. Visit the Find Support page to find resources that might be able to direct you to a hemophilia treatment center.
Remember, your hemophilia treatment center is always there to help you if you need them. So, keep in touch. They can provide you with a wide range of information, contacts, and reassurance to help you live life to the fullest.
You may find it helps to talk to the nurse, social worker, and other parents at your hemophilia center. They can also give you contact information for the Hemophilia Society and local support groups.
Meeting with other families going through the same thing can be helpful. Challenging situations can become much easier just by talking to other parents about how they got through them.
Many caregivers dealing with hemophilia inhibitors form strong bonds with other parents they meet in their support groups. They might be people who live near by, or can talk on the phone at any time of day or night.
Often times, these support groups are the first to know about new science and new products. They are also great at helping you to know what type of questions to ask your doctor and hemophilia care team.
Your doctor or hemophilia treatment center can put you in touch with families and tell you about local support groups and programs. You can also find local support groups through the World Federation of Hemophilia.
Many people rely on the wide range of support and information to be found on the Web — everything from blogs, to Facebook groups, to other sponsored sites. Try doing a web search to learn more about a particular issue you're dealing with, or ask your doctor or hemophilia care team to suggest good support sites.
You can find a list of links on our Support page.
Involving the Family
It will also help if the rest of your family understands about hemophilia and inhibitors, especially any other children you may have.
Other kids in the family may feel like they are being overlooked or getting no attention when so much time and energy is focused on a child with inhibitors. Explain what's going on and let them help, if they can. It will allow them to be more understanding and to feel involved. Treat them to special days where the family does what they want, so they can have their moments in the spotlight, too. Or, have your child with hemophilia and inhibitors help them and get involved in supporting them with activities, too, so that everyone learns that supporting each other goes both ways.
Your doctor is the best person to ask for advice on anything related to hemophilia and inhibitors. Even if they are very busy and may not be able to talk to you for a long time, you should still talk to them, since they can put you in touch with the right resources.
While you and your child are living with hemophilia and inhibitors 24 hours a day, seven days a week, and talking to people in support groups and in online communities, you might occasionally hear about new advances even before your doctor does. If this is the case, share and discuss your findings with your doctor.
Handling the Day to Day
No one can give your child better support than you, your doctor, your local support team, and your hemophilia care team.
While you will need to be a little cautious, children need to be children. It is important for you to encourage your child to play and have fun.
On the other hand, they may feel guilty if they get hurt — particularly if you become cross about it. Remember, if your child has a bruise or bleed it simply does not help if you become upset or angry. Instead, follow the guidance from your hemophilia center on how to deal with bruises and bleeds, take some deep breaths, and try not to get upset.
Dealing with the Teenage Years
The teenage years can be a tough time for young adults and their parents.
When a teenager has hemophilia with inhibitors, there are additional steps and concerns found along the way to independence. For example, learning to carry out an infusion by themselves is a huge deal. There should be a transition plan developed for them. Doing this properly will help both of you — they learn to take on more responsibility in the right way, while you get some time freed up for yourself.
Check out our page on Administering Your Own Infusions to learn more or share it with your child.
They may also be spending increasing amounts of time away from home, going on trips, or staying over with friends. This is good for them. But, this means more responsibility. They'll need your gentle guidance when it comes to taking their infusion equipment with them and taking the necessary precautions to prevent bleeds.
You Are Not Alone
Finally, remember you are not alone. Your child's hemophilia is a part of your life, but it does not need to dominate every day. It does not define them — or you. If you are having a hard time, talk to someone. Whether it's a friend, spouse, doctor, counselor, someone at your hemophilia care center, an online chat room, or just someone on the street … talk to someone. Don't keep your emotions bottled up.
You do a lot to help your child. It's OK to let others help you.