Bella Adams
Hemophilia is a hereditary disease, and fortunately, it is not fatal today. If you or your child has been diagnosed with hemophilia, you can do a lot on your own to control the course of hemophilia. Stay active, just learn to recognize the warning signs in time!
Lifestyle with hemophilia
Take care of your health, follow your doctor’s advice, and follow the following rules:
- Learn how to properly care for and treat injuries. Thoroughly clean minor cuts and scratches of the injury, and then apply a tight bandage. Serious injuries require medical attention.
- Always tell all healthcare providers that you (or your child) have hemophilia. This will allow for the safe planning of medical procedures, such as dental care. You may need to take the necessary medications beforehand to help your blood clot.
- Never take medications or supplements, even herbal ones, without a doctor’s prescription. Some medications, such as aspirin, can interfere with blood clotting, so always consult your doctor about what you should or should not use.
- Stay active. Just because your child has hemophilia A doesn’t mean they don’t need physical activity. Sports exercises make a child stronger and more agile, which significantly reduces the risk of injury.
If you have a child with hemophilia growing up …
Parents of children with hemophilia should also take care of some precautions:
- Your child should wear protective equipment such as knee and elbow pads and helmets during any activity that could result in a fall.
- Always use seat belts in car seats, strollers, and chairs.
- Check your home and yard for hazards, such as removing furniture or equipment with sharp corners.
Teach your child safety rules and basic information about hemophilia. Tell them when and how to get help if needed. This will make them feel more confident, which will further reduce the risk of injury.
Seek support, at least online: many people suffer from hemophilia, and their advice or experience can be helpful and inspiring to you, especially if you are just beginning to understand the specifics of this disease.
Visit your doctor regularly and follow your treatment plan. In severe hemophilia, regular prophylactic treatment may be needed to effectively prevent bleeding episodes, which is done to prevent bleeding, that is, before it starts. If the disease is more moderate, the patient may receive on-demand therapy, when treatment is given during bleeding to stop it.
What to expect?
Although there is no complete cure for this disease, people with hemophilia can live a healthy, fulfilling life if they follow all the precautions and treatment plans.
This can be achieved through prophylactic treatment – regular administration of clotting factor concentrates to prevent bleeding. The idea of prophylactic treatment arose after it was noted that people with moderate or mild hemophilia (whose clotting factor levels are 1% or higher) rarely experience spontaneous bleeding. In addition, they have less joint damage than people with severe hemophilia.
Doctors believe that if they could keep the minimum levels of clotting factors at about 1% by regular injections of clotting factor concentrates, they could reduce the risk of bleeding and prevent disabling joint damage.
Pre-emptive replacement therapy works in most cases, although in hemophilia A there is a 20 to 30% chance that you will have difficulty using replacement therapy – your body will “refuse” to take clotting factor medications.
In this case, your doctors may recommend Hemlibra®, a new medication that prevents or significantly reduces the frequency of bleeding episodes in adults and children with hemophilia A, regardless of the form. Hemlibra® has been shown to reduce the frequency of bleeding compared to currently available antihemophilic drugs, and it needs to be injected only once a week and not into a vein, but subcutaneously, which makes the treatment process much easier, especially in children.
