“You should feel empowered to know that you can live a normal life … and do the things you need to do,” explains Chieh-Lin Fu, MD, hematologist and medical oncologist at the Cleveland Clinic in Weston, Florida.
In addition to taking medication regularly, there are things you can do to stay healthy if you have hemophilia B.
1. Stand the treatment plan
Every 6 to 12 months approximately, depending on your needs, you should meet your providers at the hemophilia treatment center you go, explains Dr Fu. You can discuss the treatment and if you have enough supplies at hand in an emergency.
2. Stay active (and safe)
3. Protect your joints after an injury
If you hurt yourself, remember the price of the acronym:
- Protect the area by limiting its movement (for example, carrying a splint).
- Rest the area to limit swelling.
- Ice The area with a cold package to reduce pain.
- Compress the area to reduce bleeding and swelling.
- Raise The area, especially within the first 48 hours of injury, to reduce bleeding and swelling.
4. Get regular dental cleansing
Because the complications of teeth and gum problems can cause bleeding, they can be more serious for people with hemophilia B. This is why it is important to plan regular controls and cleaning with your dentist, which can help prevent more serious oral problems from developing.
“Routine dental care is really important,” explains Margaret V. Ragni, MD, director of the Center for Hémophilie de l’Ouest PA and professor of medicine at the University of Pittsburgh. In this way, “you can master everything that may have to be worked later.”
5. Eat foods rich in iron after bleeding
Iron, which is present in red blood cells, helps to harm oxygen throughout your body. “If you have a bleeding, you will lose blood and thus lose iron,” explains Fu. This is why, after bleeding, “it is important to have your blood counts checked to see if you have a lack of iron.”
6. Know the signs of bleeding
Coagulation factor drugs can do such a good job to prevent bleeding that some people can underestimate a bleeding when it occurs, said Dr. Ragni.
Do not forget: bleeding is the most common near the joints – the ankle, the knee, the hip or the elbow. At the beginning, the joint can feel stung, but in addition to blood of blood, you will begin to feel a tender and to see swelling. It can also be painful and hot when you touch it.
7. Take care of your emotional well-being
“With chronic diseases, including hemophilia, there are often psychosocial problems that can be more difficult to manage,” explains Ragni. You may have spent a large part of your life being afraid to injure yourself or bleed. Or maybe you just felt different from the others. Whatever your challenges, a support group can help you. Connecting with other hemophilic people can help you feel seen and less alone in your trip. You can find a support group through the hemophilia treatment center or local chapters of the National Bleeding Disorders Foundation (NBDF).
The point to take away
- In recent decades, progress in the treatment of hemophilia has made life easier for most people with the disease. But you must always take precautions to live as well as possible.
- Stay physically active, but avoid contact sports such as football or hockey. Try other low impact activities, such as yoga.
- For emotional support, try to connect with others via the hemophilia treatment center you are going or a support group for hemophilia.
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