Q: What is hemochromatosis?
A: Hemochromatosis is an iron disorder in which the body simply loads too much iron. This action is genetic and the excess iron, if left untreated, can damage joints, organs, and eventually be fatal.
I recently found out that I have Hemochromatosis. This means that I have to medically extract the excess iron from my body via phlebotomies. That's a fancy word for donating blood.
Having too much iron in the blood can cause some serious side effects like: cirrhosis of the liver, heart problems, joint problems, diabetes, and even cancer. To control it, I must have blood taken ever week to get my iron levels to normal and right now, my levels are 20 times higher. This means going in for a phlebotomy every week for the next 18 months, to get my iron count down to normal levels. (Read my update here)
My Doctor recommended donating blood to save money because it is often times free. If I do this at my Doctor's office, those copays can add up quickly! I wasn't sure I would be able to use a donation center because of the nationwide ban on gay individuals donating blood.
So I called the blood donation center and asked if they would still allow me to donate. They said yes and pointed me to what is called a Therapeutic Phlebotomy Order, which requires a prescription from my Doctor. It will also require me to go on a certain day when they deal with these cases. I also found out that since it's Hereditary Hemochromatosis, I won't be charged a fee, so I guess that's a silver lining. However, since I am gay, the blood must be discarded. I just wish it was as therapeutic as the name makes it seem!
I also have to change my diet in significant ways by reducing red meat consumption and other foods that have high levels of iron. This is complicated because many foods are fortified with iron like cereals, pasta, and bread. It becomes a challenge and point of frustration, to find low iron foods and avoid things I love, like carne asada or pasta. Nooo!!
One of the hardest parts of this journey is the medical group I work with, Arizona Cancer Care Centers Hematology/Oncology Division. It's so hard to enter a building and see word cancer everywhere and to be surrounded with people who are fighting a different kind of battle. My battle is in a way, positive, because of how treatable it is compared to their battle but we're all still fighting, sometimes side by side. Even after I get my blood iron levels down to normal, I will still have to go in at best, every three months to maintain those normal levels. This will go on for my entire life and some of my family members have been doing this for decades.
Why did you need to know this? Well, many people go undiagnosed and end up having a shorter life span due to organ damage and failure. Some families are never aware that this is a genetic disorder and the entire family should be tested. All it takes is a simple blood test to check your Ferritin levels. If they come back normal you're fine! If they are high, then you know and you can treat it. Knowledge is power and in this case it can mean living a normal life, free of the side effects of Hemochromatosis.
If you want to learn more visit: http://www.hemochromatosis.org