When a child is diagnosed with a bleeding disorder, the parents may have feelings of disappointment, worry and perhaps even guilt. These emotions are temporary. This may be an especially hard time for those who have no family history of the condition. Some people talk about things while others bottle up their worries and concerns. Parents and other members of the extended family need to have the reality of haemophilia carefully, patiently, and repeatedly explained to them by members of the comprehensive haemophilia care team. After a while, parents may even find that it is not nearly as bad as they first imagined. The unknown is often more frightening than reality.
The impact of replacement therapy factor concentrates on the lives of people with haemophilia needs to be explained. It is important to remember that with good treatment the boy with haemophilia has every chance of growing up as an active, fit child who can participate in family, school and later working life.
Because bleeding disorders are rare conditions parents may feel isolated and alone and it is very helpful to be put in touch with others in a similar position. Both the Treatment Centres and the Irish Haemophilia Society can bring families together in this way.
Don’t forget you can call our Outreach Coordinator Lyndsey Connolly in the office on 01 6579900 to discuss any areas of concern you may have.