Haemophilia: how sentinel patients have developed a warning semiotics

Haemophilia: how sentinel patients have developed warning semiotics. The experience of the disease may help the patient to develop effective actions to manage every day, if it is accompanied by a personal reflection. Following a process that sometimes can be long, some people with hemophilia, called sentinel patients have developed a personal semiology of early and subclinical signs of hemarthrose, complementary to medical semiology. Learning such an approach can be made possible within therapeutic education workshops co-facilitated by patient/parent and caregiver resources. Facilitated by peer intervention, the expression of singular feelings of early signs, helps patients reflect on strategies adapted to their situation and conducive to faster adequate reaction towards their bleeding episodes, particularly through self-care actions. This collaborative work between patients and caregivers also brings benefits to professionals who, for some, consider differently the care they provide to people they meet in their healthcare activity.
Competing Interests: Le groupe de travail du dispositif de patients/ parents-ressources regroupe l’Association française des hémophiles (AFH), le laboratoire Éducations et Pratiques de Santé (EA 3412) de l’université Paris-13, la Coordination médicale pour l’étude et le traitement des maladies hémorragiques constitutionnelles (COMETH), le Centre de référence de l’hémophilie et autres maladies hémorragiques constitutionnelles (CRMH), la Fédération des infirmières françaises de l’hémophilie (FIDEL’HEM), le Groupe de réflexion et d’information sur la kinésithérapie des maladies hémorragiques (GRIKH).