Blood clotting disorders and what it means to have one, is something most people don’t’ know anything about. Having a blood clotting disorder, means that patients suffer from (spontaneous) bleeds, especially in joints and muscles. Other symptoms patients regularly suffer from are bleeds in mucosas and (larger) external bleeds (for example after surgery and/or an accident). The cause is a blood clotting factor deficiency in the blood or platelets that don’t function properly. Without the correct treatment this can be life threatening and lead to permanent disability, not to mention the long-term treatment and its impact.
The treatment of blood clotting disorders is complicated and requires a lot of knowledge. The dependence on blood clotting factor and a proper treatment is very big, otherwise leading a normal life is simply out of reach. Luckily the medical facilities in the Netherlands are adequate at the moment, which makes living with a blood clotting disorder easier. However, this is not a matter of course. In the past the available treatment has led to infections with HIV and Hepatitis B and C amongst the patient population. The anxiety that goes hand in hand with having a blood clotting disorder and the caution that is permanently required, certainly has its impact on our members. After all, they are and remain chronically ill!
Furthermore, there are still a lot of undiagnosed people with a blood clotting disorder. Bruising easily, heavy menstrual bleeds and wounds that don’t heal fast may be indications of a blood clotting disorder.