Hemophilia A, a bleeding disorder, is typically diagnosed at a very young age. Moderate and severe cases, for example, are often diagnosed before a child’s first birthday, according to the Centers for Disease Control and Prevention. If you or your child is diagnosed with hemophilia A, it’s important to stay clear-minded and ask the right questions.
1. Does hemophilia A come with lifestyle restrictions?
In the past, living with hemophilia A was much more difficult. Nowadays, improvements in treatments and a better understanding of the condition have helped people with bleeding disorders live more normal lives.
For instance, in the past all physical activity was discouraged for people with hemophilia. But newer research has shown that physical activity can actually reduce or prevent bleeding episodes by strengthening muscles and improving the stability of joints.
Of course, there are still some activities that people with hemophilia A should avoid. It may not be easy to talk about, but people with hemophilia A are encouraged to have a thorough discussion with their doctor about which activities they should and shouldn’t participate in. The doctor can also give you tips on what extra precautions you or your child should take when exercising or playing sports.
2. What’s the risk for complications?
If you or your child has hemophilia A, you’re probably worried about complications. People with hemophilia A are at risk for internal bleeding, joint damage, heart and renal disease, and infections. There’s also a chance of having an adverse reaction to medication, which can make treating a bleed more difficult.
The risk of complications depends on the severity of hemophilia A and how quickly a person gets treated for bleeds. Being overweight is strongly related to having less joint mobility. Ask your doctor about the risk of experiencing a complication and also what symptoms to look out for. Be sure to also ask about different ways to prevent complications, including diet and exercise programs to help you or your child maintain a healthy weight.
3. How often will treatment be required?
Only a doctor can assess the severity of a particular case of hemophilia A and tell you how often you or your child will need treatment.
Some people with hemophilia A only need to receive replacement therapy when they experience a bleed. This is called on-demand or episodic treatment. Others need to have an infusion of clotting factor more frequently in order to prevent bleeds. This is called prophylactic therapy.
Nowadays, many people with hemophilia A can learn how to infuse their treatment on their own at home. People who learn how to treat their bleeds at home are less likely to be admitted to the hospital for a bleeding complication.
If you or your child require prophylactic treatment, ask if you can learn how to infuse clotting factor at home. Of course, home infusion comes with increased responsibility and isn’t for everyone. Your doctor or hemophilia treatment center (HTC) team can give you the proper education and support to help you learn whether home infusion therapy is right for you.
4. Are there any new treatments or clinical trials nearby?
Staying informed of newer treatments is essential for people with bleeding disorders. Newer and safer treatments are being researched and tested throughout the world. Your doctor should be aware of any up-and-coming treatments that you or your child may be a candidate for. They can also let you know if there are any clinical trials recruiting participants in the area that they recommend.
5. What’s the outlook?
When you find out that you or your child has hemophilia A, your doctor will probably tell you right away that there is no cure for the condition at the moment. A lifelong illness can be a difficult concept to handle, and you might be anxious about the life expectancy of those with bleeding disorders.
The good news is that the life expectancy of a person with properly treated hemophilia is almost equal to that of the general population. Your doctor or HTC staff can give you more information about the effectiveness of current treatments and how to reduce the risk of complications. Most importantly, having an open and honest discussion with your doctor about how this condition affects people in the long term can help give you the confidence to take control of your life, or prepare your child to eventually do the same.