About Hemophilia...

Hemophilia is a rare genetic bleeding disorder in which the blood does not clot normally. Persons with hemophilia are missing or have a low level of a protein needed for normal blood clotting. About 18,000 people in the United States are known to have hemophilia. Hemophilia usually only occurs in males, except for rare exceptions. A person with severe hemophilia means that they have less than one percent clotting factor in their system.

Friday, March 5, 2010

March Hemophilia Awareness Month!

March is Hemophilia Awareness month! Very fitting considering that Dwight was born in March himself, uh… on the thirteenth no less in the early 1980’s. Just as Dwight totally changed our life, hemophilia was entering the AIDS era due to contaminated factor given to clot the blood that would ultimately kill the grandfather Dwight inherited his severe hemophilia from, his grandmother, and thousands of other innocent lives.

During Dwight’s beginning years as we learned to cope with distinguishing internal bleeds we also were caught in the middle between the government refusing to pay for the more expensive heat-treated factor and our hematologist that realized early on- even though the drug companies kept everything hushed up and lied to us customers- the regular factor was contaminated so he wouldn’t prescribe nothing but heat-treated. Dr. Hanna literally saved our son’s life. We will forever be grateful to him.

Medical advancement also exploded as the powdered factor was able to be almost instantly dissolved when sterile water was added instead of having to shake the mixed factor for thirty minutes, then upgraded where the factor no longer had to be store in the refrigerator enabling me to reclaim an entire shelf in my refrigerator that once was used to store factor, to now prophylactic treatment where Dwight infuses himself three times a week keeping a low level of factor in his system instead of having to wait until a bleed starts before factoring. This avoids the long painful bleeds of childhood even though Dwight continues to average two to three internal bleeds a week.