Johanna

“This is not curable but it is treatable, especially if caught early.”

It was 1987. My wedding was a month away. Dad came out to Seattle to visit me from Montana. He was walking with a cane, doctors telling him his arthritis and hip pain was due to his long distance running and very active lifestyle. He was 53. He looked 73.

We had an appointment at University of Washington Medical Center to see an orthopedic surgeon about replacing dad’s hip. Many tests, much-drawn blood. The doctor was back within the hour, with a team of doctors trailing behind. His first question to dad: Please pull up your pant legs. Along his shins was this weird discolouring – a rusty colour. The doctors ran another blood test. This time they were panicky. Dad’s ferritin was thousands of times higher than it should be. They immediately did a phlebotomy, dad’s first of hundreds. Each week for a year dad was drained of a pint. Sometimes Mom, a nurse, would do it for him at home, sometimes he would go into the clinic. His arm veins became weakened from all the poking so he was then stuck in the thigh. By the time he was diagnosed with Hemochromatosis, his liver, heart, and joints throughout his body were affected. He was 53. For years his doctors told him he was arthritic, had overuse syndrome from exercise, etc. They were so very wrong.

In hindsight, we all know now that my dad’s parents both had the genetic disorder. Both grandpa and grandma presented with serious arthritic conditions and heart problems. Both died before 70. Both are of Scandinavian descent.

Dad struggled for years with the physical effects of Hemochromatosis. He was on many medications for pain, heart, and diabetes. He maintained a good weight, still got out and walked and golfed, but the pain was always there. He fought really hard and rallied for many years. He passed away at the age of 81 December 26, 2015 from complications due to this genetic disorder.

When Dad was diagnosed all those years ago, my siblings and I underwent genetic testing. We too were diagnosed with this blood disorder: We are all C282Y homozygote. What does this mean? Be vigilant with blood letting and get the appropriate tests. In my 30s and 40s I gave blood at the blood bank every 56+ days. I got lazy at times and forgot to donate. In my 50s I became tired, run down, lethargic, my knees, hips, hands and neck were always painful, which was unusual for me. Following some blood tests, my doctor called me in a panic. My Ferritin was three times normal high and all my liver enzymes were elevated. My C Reactive Protein was high (a marker for inflammation). I was in menopause, and no longer letting go of blood naturally. My own thoughtlessness and cavalier attitude put me in danger. I began blood letting until my Ferritin was back in normal range.

Even with normal Ferritin levels, I still need to have my liver checked frequently. This past year I had a biopsy because something in my tests looked odd. To date I am lucky. All seems ok. But I am now vigilant about blood letting (bleeding as some call it). While my joints still ache and at times my whole body feels tired, sore and pained, I know I am doing all I can do to stave off the Iron Demon.

If you are diagnosed with Hemochromatosis, don’t panic. Follow the Iron Overload protocols. Make sure your doctor understands what Hemochromatosis is. You may need to educate them. Be your own advocate!!! Get second and third opinions if you aren’t happy with the first one.

Exercise, eat well, give blood, get tests yearly, you will be ok. AND, spread the word. This is not curable but it is treatable, especially if caught early.