How to Manage Your Bleeding Disorder—Making a Plan and Sticking to It
Whether you’re newly diagnosed or have always known you’ve had a bleeding disorder, it's never too late to take the steps to better manage your bleeding disorder, your health, and your life. Make a plan you can stick to by knowing the facts, setting goals, and making good choices.
When it comes to your health and your bleeds, what are you happy with? What would you like to change? Once you understand where you are, you can then set goals to get where you'd like to be.
- Track your weight. Has it changed by 5 to 10 pounds in the last month?
- Log your physical activities. In the last month, how often have you ridden your bike, gone to the gym, played an interactive video game?*
- Stay in contact with your Hemophilia Treatment Center. In the last year, how often have you connected with your HTC care team?
Not all activities are appropriate for all people. Be sure to consult your physician or treatment center before beginning any exercise program or participating in sporting activities. If an injury occurs, contact your physician or treatment center immediately for the appropriate treatment.
- How many bleeds did you have in the last month? In the last year? How many fewer bleeds do you want to have?
- What motivators might help you achieve your goals? What obstacles might get in the way of achieving your goals?
- Your goal may be to have fewer bleeds than you had last month or last year. Talk with your clinician to determine the appropriate and realistic goal for you.
Make a Plan
To prevent bleeds, you need a plan. Work with your clinician to create a plan that works for you.* Your plan will also focus on overall health. Exercise and eating well are key to staying strong and reducing stress on joints by maintaining a healthy weight.1
Call your HTC or hemophilia clinician if any unexpected bleeds occur.
Stick to It
A good plan helps you take charge. A great plan will help you do it in a way that works with your life. The key is to create a routine you can stick with over the long term. That way, it's easier for you to realize the possible benefits of tracking bleeds.
While you're tracking your progress toward your goals, also note your patterns. What do you need to do to achieve your goals? What challenges are in the way? Write these down, and then think about key behaviors you can use to stay on the right path.
Sticking to Your Plan
Keeping track of your infusions helps you notice patterns. If you're missing your infusions for recurring reasons, talk to your clinician about adjusting your plan to better fit your needs.
Watching Your Weight
Remember that your weight is important for calculating your factor dose, which can change the effectiveness of your infusions. If you lose or gain weight, contact your HTC to see if your dose needs to be adjusted.
Developing a Fitness Plan
Exercise is a great way to improve your health. Your HTC staff members are great resources to help you develop a fitness plan that is right for you. Make sure to talk to your physician before starting a new diet or exercise plan.
Shire does not recommend a particular treatment for specific individuals and recommends that you consult your treatment center or physician before pursuing any course of treatment.
- LaFranco J, Delorm D. Making better food choices. HemAware website. http://www.hemaware.org/story/making-better-food-choices. 2010. Accessed January 26, 2017.