Speaking of hemophilia, we are talking about a disease that cannot be cured. What is life with this disease like, both from the point of view of the patient and his loved ones?
Hemophilia today is a little different from hemophilia 20 years ago. Our children already have treatment available in the drug program and are covered by prophylaxis. This prophylaxis saves their lives and protects them from disabilities that very often affected their grandparents, for example. Prophylaxis in severe hemophilia, however, looks like this: our children have clotting factor administered every 2-3 days. This is done in the form of intravenous infusions. Children with hemophilia can thus lead almost normal lives or play almost all sports. They are practically no different from their peers. What is important in all this, however, is the word "almost." Let's think about what a huge stress for every child and sometimes adults are vaccinations or blood draws. Often people faint at blood draws. It is not uncommon for children to scream, lash out and cry at such procedures. Our kids have such experiences three times a week. It takes years before they get used to needles and pricking. For the first three years, they scream and jerk, just like healthy children do when blood is drawn. We hear everywhere that hemophilia is easily treated. In fact, we have a cure for it, but the other side of the...
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