(Ages 18+ years)
By now, you probably know quite a bit about your bleeding disorder and how to manage it. As an adult, you also might be facing major changes in your life (such as starting college, taking on a new career, having a family, heading toward retirement years, experiencing a job loss or divorce or caring for an aging parent) that bring extra challenges. No matter which phase of life you’re in, there are some key areas to manage and actions you can take in order to help keep your condition under control and to remain as healthy as possible.
How can I keep myself healthy while managing my condition
In order to keep your health in line while managing your condition, you may want to consider the following tips.
- Keep moving to keep your body healthy. Since bleeding disorders can cause joint pain and swelling, regular exercise also can help reduce this by keeping the muscles around the joints stronger.
- Talk with your healthcare team about healthy foods and exercise to help you maintain a healthy weight.
- Maintaining a healthy weight is important because:
- Extra weight adds stress to your joints, and can increase joint pain and the number of joint bleeds.
- Any extra weight on your body also can make it harder to find veins for your infusion treatments.
- Since the dose of clotting factor is based on your weight, having extra weight can mean you have to use higher doses of clotting factor.
- Stay connected with your healthcare team and ensure they are a partner in your care. Ask questions during appointments to better understand the care plan created for you.
How do I best manage pain
Below are a few brief tips to help you manage pain. Some of them might work for you, while others won’t. You can do some of these methods yourself, but your healthcare team might need to help you with other methods.
- Follow your hematologist’s recommendation for your medication and treatment regimen.
- Ask your hematologist if you should use a pain-relief cream before your infusions to numb the area where the needle will be placed.
- Outline an exercise plan with your hematologist or physical therapist that best fits your needs and capabilities while keeping you safe.
- Use RICE to reduce pain and stiffness due to joint damage.
- Do things that help you relax and reduce stress – long-term stress can increase the physical and emotional effects of pain.
- Keep a record or your pain, bleeds and infusions in a treatment log that can be shared with your hematologist.
- Avoid injury to avoid pain – follow safety techniques during exercise and other activities.
- Remember: Do not take any medication that contains aspirin or an NSAID (a nonsteroidal anti-inflammatory drug). These drugs can prolong bleeding. Read the label on any medication you use to see what’s in it. Also, check with your pharmacist when a medication is prescribed. Aspirin also can be listed as ASA (acetylsalicylic acid).1
For additional information about living with hemophilia in your adult years, nutrition, dental care, safety issues, insurance and pain management, download:
- 1Hemophilia Foundation. Recommendation #175: "Guidelines for emergency department management of individuals with hemophilia". October 2006. hemophilia.org/sites/default/files/document/files/175.pdf. Accessed Aug. 9, 2017.