Introduction — Tales of Hemophiliac
Hi, my name is Ted and have mild Hemophilia A (~20% Factor VIII levels). Hemophilia is a genetic bleeding disorder in which there are low levels of blood clotting proteins, which are needed to stop bleeding after an injury. The main types of Hemophilia are Hemophilia A (Factor VIII deficiency) and Hemophilia B (Factor IX deficiency). Lack of clotting factors lead to longer than normal periods of bleeding. I have experienced painful episodes of internal bleeding, leading to joint damage (severe arthritis).
The first sign of my Hemophilia was when I was circumcised as a newborn infant in 1985. I had uncontrolled bleeding. My mom’s brother and cousin have Hemophilia so it was not surprising that I also had the disease. Nine years later my younger brother was born and unfortunately he also inherited the disease.
Since I am a mild Hemophiliac, minor cuts and bruises do not impact me much differently than a “normal” person. I have enough reserve Factor VIII to clot these type of injuries. I have had deep cuts that required stitches and Factor VIII infusions. While these wounds may bleed a lot, they do not usually cause much pain. My worst injuries have been internal bleeds into muscles and joints (hips, back, ankle, tricep, knees). This is because the blood swells up in my body and has no where to go, whereas with an external cut the blood can flow out of my body. The accumulation of blood at the injury site (and associated pain) can take weeks to months to clear up .
Unfortunately I have become familiar with the hospital and emergency room. I have broken two bones in my foot, two thoracic vertebrae, and arm (ulna). Thankfully, these were separate injuries. My trouble joints are my hips and had many bleeds into my psoas muscles (hip flexers). Although my hips are the only joints formally diagnosed with arthritis, I have the same stiffness in many of my other joints (neck, back, shoulders, knees, and ankles) and I suspect they are arthritic as well. I think this is because my hips are out of alignment causing my other joints to compensate and also become out of alignment.
Some years I have no injuries and do not require factor; fortunately this has been the past couple years. Other years I have several injuries and require a lot of infusions, like when I was in my teens and early twenties when I was still figuring out my body and my limits (I still am in many ways).
I want to share my experience on prevention and treatment of bleeding episodes. There are a lot of things I learned that I wish I had learned earlier, which would have saved me a lot of trouble and pain. Although I have experienced a lot of pain, I have also experienced a lot of healing. I believe the body can heal itself if helped guided down the right path. I am also encouraging this to be a two way conversation where you can share your experience with me as well.
-Ted
