People with bleeding disorders face life-long physical, psychological, financial, and employment challenges. How well they meet these challenges depends on many issues. These include the severity of their disorder, the quality and availability of medical care, their level of insurance coverage and ability to pay for care, and the strength of their personal support networks.
Parents raising a child with a bleeding disorder have many issues to address. Some are practical concerns, like health insurance coverage and choosing the best treatments for the child. Another concern is how to deal with the child's emotional responses to living with a chronic health problem. If the child with a bleeding disorder has siblings, they too will have emotional responses to living in a family with a member who has a chronic health problem. Finally, one must balance helping the child lead as active a life as possible with protecting his or her well-being.
For adults and children alike, the physical hardships and limitations imposed by bleeding disorders often have emotional and social impacts. A hospitalization or a period of limited mobility is stressful as well as disruptive to school, work, and family life. Planning one's life around health concerns or making job decisions based on access to adequate health insurance also can have a profound personal and practical impact. Adults who have a severe bleeding disorder sometimes encounter discrimination by prospective employers. These are just some of the issues faced by people with chronic health conditions and their families.
There are support groups run through treatment centers and chapters where people with bleeding disorders can talk about the issues they confront in their daily lives. Another aspect of support groups is the sharing of common experiences, whether it be for new parents, young adults, men or women. To learn more about the availability of a support group near you, contact your local chapter or hemophilia treatment center
For patients and families with hemophilia, understanding the disease is only the beginning of coping with it. Hemophilia is a disease that requires constant education, where care changes with the age and phase of the child. What may complicate the life of a three year-old may not even faze one who is 12.