An important part of learning to manage your hemophilia on your own is learning to trust your own senses. When you experience damage in a joint, your body signals to you in ways that let you know that something is not right. Although you know your body best, you also need to trust the advice from the experts on your comprehensive care team (CCT) as well – your physiotherapist being one of them. Your CCT physiotherapist has many years of experience working with people who have hemophilia. They have seen hundreds of bleeds in different joints and at different stages. They have expertise in assessing the health of your joints, particularly after or even during a bleed. Although you’ll see your physiotherapist for regular check-ups, the more often you have a bleed, the more often you’ll see them in between these check-ups.
Your physiotherapist has unique knowledge
As you have learned in this program, using prophylaxis to treat bleeds is the best way to prevent damage to your joints in the long run. Share any concerns over your joints and long-term goals with your physiotherapist. Being honest with them and showing them that you have been listening to their advice between visits shows that you are committed to managing your hemophilia care.
Your physiotherapist can help by:
- Letting you know when you should be able to use the affected joint again. Taking a break from an activity for a few days may mean you can use that joint sooner the next time.
- Giving you specific exercises to help slowly regain the function in your joint that you may have lost.
- Giving you external aids if you need them, such as orthotics, splints, braces, and assistive walking devices.
Non-hemophilia physiotherapists can help too
Unlike the physiotherapist on your CCT who specializes in hemophilia care, you may visit other physiotherapists outside your CCT. You may visit a physiotherapist at a clinic that is closer to you, perhaps one on campus if you go away to school. Most likely they will have never treated a person with hemophilia before seeing you. For this reason, do not assume they have the same level of knowledge or understanding as your CCT physiotherapist. Be prepared to explain your condition to them in more detail than you would with your regular physiotherapist. You can also arrange for the physiotherapist from your CCT to collaborate with your new physiotherapist, so that they fully understand what is involved in your care.
They may not be able to assess bleeds into joints or muscles as well as your physiotherapist at your CCT. If you have a new injury, it is a good idea to return to your CCT physiotherapist. Since they have the expertise, your CCT physiotherapist can help speed up your recoveries so you can get back to the activities you enjoy most.
Sometimes we drag our heels when we walk instead of lifting them up as we take each step. Dragging your heels can cause the side of your shoe to wither. Keep this in mind when buying expensive shoes, especially if you need orthotics. Talk to your physiotherapist for more tips.
