by Joanne Lynch

Created on: February 25, 2009

This past week, a very sad announcement went out at the agency I work for concerning one of my colleagues. We were told that he had died of hemophilia related complications. It was very shocking to a lot of the staff. I don't think anyone ever gave his challenges much thought.

Some people knew this employee as the sometimes "grumpy" staff member that sat so many cubicles away from them. Some knew him as the man with the often weird sense of humor. I saw a person with a zest for life despite his struggles. A man that would get up every day, race into work, at times in his mustang, park in the handicap parking space, limp into work (often in pain) and try to get through his day working a public service job helping others.

Until this announcement, I have to admit, I did not know much about hemophilia though this disorder has touched my family as well. My husband's stepfather's grandson also has this disorder. Out of respect for my colleague, I wanted to find out more about his life's challenges.

So, what is hemophilia? It is a disorder of the blood. When we are injured, our bodies know how to form blood clots to control bleeding. Blood is changed from a liquid form to a solid form. When someone has a bleeding disorder, their bodies are missing essential ingredients to help their bodies form blood clots and control bleeding. So, they will bleed longer.

There are three different levels of hemophilia. There is mild, moderate and severe hemophilia. Individuals with mild hemophilia usually only bleed after serious injury or trauma. Individuals with severe hemophilia not only bleed after an injury but have frequent spontaneous bleeding into joints and muscles.

One major complication of hemophilia is joint damage that can cause arthritic changes when there is bleeding into a joint. In the late 1970's and 1980's, individuals were treated with blood products from donors. This blood supply had become contaminated with HIV and Hepatitis. Another complication for individuals with bleeding disorders during that period of time was infection. Fifty percent of individuals with hemophilia became infected with HIV prior to 1985.

Symptoms of hemophilia can include deep muscle bleeding causing swelling of a limb. Damage to joints is also inevitable. The development of proteins in the blood can inactive clotting factors used to treat the bleeding.

Bleeding is thus the leading cause of death in an individual with severe hemophilia. My colleague died at the age of 49. I cannot imagine what his wife of 18 years must be going through. Although she wrote a very heartfelt email and assured us all that her husband did not want people to mourn his passing, we were saddened never-the-less.

There are so many courageous battles being fought in others' lives. We can never know truly what the person sitting next to us or on the same floor as us, is going through on any certain day. What we can do is make the best of each day and try to find room for understanding, even if we may not always know someone else's story.

Sources:

http://www.hemophilia.org/NHFWeb/MainP gs/MainNHF.aspx?menuid=0&contentid=1

http://www.mayoclinic.com/health/hemophil ia/DS00218/DSECTION=complications

http://www.wfh.org/ index.asp?lang=EN

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