“You should feel empowered to know that you can live a normal life … and do the things you need to do,” says Chieh-Lin Fu, MD, a medical hematologist and oncologist at 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. Here are seven steps you can take to ward off bleeding complications and live well:
1. Stick to the Treatment Plan
Every 6 to 12 months or so, depending on your needs, you should meet with your providers at the hemophilia treatment center you go to, says Dr. Fu. You can discuss treatment and whether you have enough supplies on hand in case of an emergency.
2. Stay Active (and Safe)
3. Protect Your Joints After an Injury
If you get injured, remember the acronym PRICE:
- Protect the area by limiting its movement (e.g., wear a brace).
- Rest the area to limit swelling.
- Ice the area with a cold pack to reduce pain.
- Compress the area to reduce bleeding and swelling.
- Elevate the area, especially within the first 48 hours of injury, to reduce bleeding and swelling.
4. Get Regular Dental Cleanings
Because the complications from teeth and gum problems can cause bleeding, they may be more serious for people with hemophilia B. That’s why it’s important to schedule regular checkups and cleanings with your dentist, who can help prevent more serious oral issues from developing.
“Routine dental care is really important,” says Margaret V. Ragni, MD, director of the Hemophilia Center of Western PA and a professor of medicine at the University of Pittsburgh. This way, “You can get an early handle on anything that may need to be worked on later.”
5. Eat Iron-Rich Foods After a Bleed
Iron, which is present in red blood cells, helps shuttle oxygen throughout your body. “If you have a bleed, you will lose blood and, thus, lose iron,” says Fu. That’s why, after a bleed, “It’s important to get your blood counts checked to see if you have a lack of iron.”
6. Know the Signs of a Bleed
Clotting factor medication can do such a good job preventing bleeds that some people may underestimate a bleed when it does occur, says Dr. Ragni.
Remember: Bleeds are most common near joints — ankle, knee, hip, or elbow. At first, the joint may feel tingly, but as more blood pools in it, you’ll start to experience tightness and see some swelling. It may also feel painful and hot when you touch it.
7. Take Care of Your Emotional Well-Being
“With chronic diseases, including hemophilia, there are often psychosocial issues that can be harder to deal with,” says Ragni. You may have spent much of your life being fearful of getting injured or having a bleed. Or maybe you’ve simply felt different from others. Whatever your challenges are, a support group can help. Connecting with others who have hemophilia can help you feel seen and less alone on your journey. You can find a support group through the hemophilia treatment center or local chapters of the National Bleeding Disorders Foundation (NBDF).
The Takeaway
- In the past few decades, advances in hemophilia treatment have made life for most people with the condition much easier. But you still need to 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 connecting with others through the hemophilia treatment center you go to or a support group for hemophilia.
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