What is everyday life like with hemophilia what is the quality of life?

Answer 1

In the United States, the prognosis for hemophilia is quite good. The quality of life varies greatly with the age, severity and complications involved with each individual case.

Older hemophiliacs, say individuals born before 1993 often have complications such as Hepatitis C and HIV to deal with. These individuals also were not treated preventatively as the younger generations are. This causes the older generations to often have extensive joint damage and chronic medical issues they must cope with in addition to the bleeding disorder itself.

Individuals with severe hemophilia often have more bleeding issues and thus were more limited with what they could and couldn't do.

Younger generations of hemophiliacs were often started on prophylaxis treatment (preventative treatment) at a young age. This has proven to prevent much of the joint damage and provide a better quality of life. This younger generation can now play sports, climb mountains and basically maintain a very normal life. Individuals born after 1993 also avoided the contaminated blood products and therefore have little to no worry about having HIV or Hep C.

People with Inhibitors (a complication in wich the replacement therapy does not work as it should) as well as those in developing countries often do not have access to any kind of preventative therapy. The quality of life for these individuals has not changed much in the past 30 years.