I am sure that a lot of people in the world have never heard of Haemochromatosis. I hadn't until just over two years ago when Will was diagnosed with it.
So, what is it?
It is a recessive gene disorder, a mutated gene! It is one of the most frequent inborn errors of iron metabolism. The disorder causes the body to absorb more iron than usual from food. Organs such as the liver, pancreas and heart are affected and ultimately damaged. Without treatment, it can cause premature death.
So, what are the symptoms: -
- chronic fatigue
- Abdominal Pain
- Liver disorders ; enlarged liver, cirrhosis
- Loss of sex drive
- Decrease in body hair
- Discolouration or bronzing of the skin
The only way to treat this condition, is to donate blood - bleed the excess iron out of your body!
Will used to only have to donate blood every three months, but when he had his iron levels tested a few months back, his ferratin levels came back as being in the high 500's - extremely dangerous, and he has been working on getting them down. He had to donate blood, weekly for three weeks and then have a blood test to check his levels again. That was a success as his levels had dropped to in the 300's, however, still not low enough, the doctor wants him under 100. So, now he has to donate blood weekly again for three weeks, then monthly for three months, then be tested again. Such a pain when our mobile blood bank only visits every three months! So, we have to make the trek to Frankston at the moment, so off we go again tomorrow. I go with him, as the first time he donated blood, he had an excessive reaction - went unconscious and we had to wait around for ages. Thank god that has not happened since, although he has had a few times lately where he has not felt the best. No wonder when he is having 500mls of blood drained weekly! He currently has permanent track marks too!!
Our two little boys will either have one of the genes or both as well, as Will has both genes. It usually does not affect you until around 30 years of age, so we won't get them tested until they are teenagers.
Hopefully soon his levels will settle down, he definitely feels a lot better once the excess iron is removed - an ongoing journey that is just a part of our lives.