The Iron Angel

There are so many memories of my mother, her kindness, her understanding manner, her fairness, her terrific sense of humor.  Those are the qualities that I miss.  Every day.  No, she wasn't young when she passed from this world, the "transition" as she called it, but to me, she was timeless and should never have gone away.  She was 78 when she lost her courageous battle with hereditary hemochromatosis (HH), genetic iron overload.  We had moved to Pittsburgh, Pennsylvania in a panic, leaving our home in south Florida suddenly.  My father, mother, and I along with my boyfriend, David, fled to this Mecca of medicine to try to help her in any way we could.  The diagnosis was dire, but it didn't have to be that way, had we only known about this disease decades earlier.  She could have had an early stage diagnosis and never died in the tragic manner that she did.  I thought I had covered all the bases, knew what I needed to know to save her, but I didn't, and now, we were all working around the clock to save her.  Due to the excess iron stored in her liver, she now had developed primary liver cancer.  It was an advanced stage, but my mother had shown us numerous times before, that miracles can and do happen, so we took that element of hope and traveled with it to Pittsburgh and a new set of doctors hoping and praying for that miracle to happen again in her life.  When I think that a simple series of blood tests years earlier could have spared us this torment, it fills me with anger and frustration.  There is nothing that I can do now to bring my mother back to life, but I can try to tell others about hemochromatosis, and hope that some will listen to our experience and learn from it.  It has been 20 years since her diagnosis with HH, and four years since her death.  Sometimes I feel so helpless when I try to make people understand this disease, because most people have never heard of it, and if they ask their doctor about it, they usually are told "not to worry about it", just what they wanted to hear.  But, some people do listen and they do get tested, and their lives are saved, and so, because of those people, I have the strength to carry on my work. 

|  Add to del.icio.us |  digg this