Another death-the world is not so rosey

I lost another cousin to hemophilia related issues yesterday morning. He was only in his mid 40's, had a family and wonderful wife. Since we have so many new treatment and care options, hemophilia's general health care treatments have improved over the years. Because of this I think we tend to forget that it is a very serious medical condition, which can claim a life very quickly or very slow and painfully. My cousin Joe was born into the unknown medical world of hemophilia. There was only on demand treatments of plasma, taking hours to infuse and difficult to obtain. No treatment centers for blood disorders existed, only reactive medical care. It was all very primitive compared to today's options. I watch Joe struggle over the years with his health, being crippled due to damaging joint bleeds. Yet he always smiled and enjoyed his life, he married had two boys, and work when health permitted. He contracted hep C from medicine. Ironic, the medicine that saves the life also takes the lives. His death was from complete liver failure, even after the proper treatments for Hep C. He had just finished with year round treatment of Hep C in March. Doctors told him every was fine, his liver looked OK, no further cirrhosis detected. He just spent the last 2 weeks of his life in ICU due to complete liver failure, he had no functions of his liver from Hep C. The doctor was unable to detect this ion March because his entire liver was blackened, making the images normal looking. He was rob during the prime of his life. Just 9 years ago we lost his brother, another who suffered with hemophilia A. He was the last to die of the initial boys that contracted AIDS in the early 80's from the Houston, TX blood bank. It scares me to no end, because I think as a society we have pushed back the seriousness of the condition. I think in an attempt at giving our boys a chance at a "normal" life. I no longer hear information about hemophilia related deaths in newsletters like i use to or at annual meetings. They have turned into silent whispers, spoken among very few. I'm not suggesting we focus on the negatives, we do need to push all the positives to living with hemophilia today, but we also need to keep everyone informed about the many other causes of death among hemophiliacs.