As a parent, when a child is diagnosed with a bleeding disorder, you may feel scared, worried and perhaps even guilty. 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.
After a while, you will find that it is not nearly as bad as they first imagined. The impact of replacement therapy factor concentrates or novel threapies on the lives of people with haemophilia needs to be explained. It is important to remember that with good treatment the child with a bleeding disorder has every chance of growing up as an active, fit person 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.
The Irish Haemophilia Society can bring families together through education, publications, conferences, information meetings, regional visits, home and hospital visits and outreach. The Society offers support and advice to help improve the quality of life for people with bleeding disorders.
Don’t forget you can call us in the office on 01 6579900 to discuss any areas of concern you may have.