National meeting for patients with Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT)
Saturday, 9 November 2019 in Amsterdam University Medical Centre
On Saturday, November 9 2019, European Reference Network GUARD-Heart organized a meeting for patients with CPVT. This was the second topic meeting organized for patients in the Netherlands.
CPVT is a rare heart disease, with a prevalence of 1:10.000, which causes a type of fast arrhythmia known as ventricular tachycardia caused by physical exercise or emotional stress. CPVT is found mainly in children and young people, although it can be diagnosed at any age. The arrhythmias are caused by an abnormal control of the level of calcium inside the heart cells. If the level of calcium becomes too high, it can result in ventricular ectopy and ultimately into ventricular tachycardia of ventricular fibrillation. If this abnormally fast heart rate does not terminate by itself, blood cannot be pumped properly around the body and it can lead to dizziness, black-outs or even sudden death. CPVT is an autosomal dominant disorder which can be treated well, if diagnosed in time.
Although it’s a rare disease, there were almost 100 patients/ family members present at this meeting. There were presentations about the disease, the inheritance, treatment, life-style advice & pregnancy and two patients gave an impressive lecture about their own experience with CPVT.
There were many questions and discussions with the audience and the organizers received very positive feedback from patients who often experience difficulties with having a rare disease.