Hemophilia is a genetic disorder characterized by a deficiency or absence of blood clotting factor. Based on the X-linked recessive inherited nature of the disease, most patients are male. Hemophilia is a rare disease, at the moment 10.000 people are living with hemophilia in Germany. Dependend on the remaining activity of the factors VIII and IX, a distinction between mild, moderate and severe hemophilia is possible.
The patients receive clotting preparation (Factor concentrate) by intravenous administration as part of a lifelong therapy. Depending on the hemophilia severity, the administration of the clotting preparation can be on demand, for example before operations or after injuries (up to 4 times per day). A preventive permanent treatment (prophylaxis) is administered to patients with severe hemophilia in regular intervals (e.g. 2-3 times per week), independent of bleeding events.
If the therapy starts directly after diagnosis in the newborn and is administered consistently for life, the patients can have a normal life without comorbidities (such as joint damage).
For a consistent implementation of the therapy, the patients or their relatives need to learn the administration of the clotting preparation by themselves. Our homecare nurses support the patients and their relatives and administer the drugs at home. At the same time the nurses train the patients and the relatives for self-administration of the medication.
Special attention is paid to learn hygienic working and a safe venipuncture. Our nurses support patients or their relatives until they are confident and autonomous to carry out the puncture and administration of the drug by themselves. If the patient is unable to self-administer the medication, we support the patient on an ongoing basis, upon request life-long support is possible.