Fur, Fowl and Follies: Friday Follies

Haemochromatosis. Do you have it? Chances are you do, or someone that you know does. It's a genetic disorder that is prevalent in those with an English, Scottish or Irish background, which means that Canada and Australia have a high incidence of people with iron overload.

I've known for years that I have this disorder because I was tested after Mum was diagnosed with it. We absorb too much iron from our diets instead of absorbing the right amount like 'normal' people do. No one ever accused my family of being normal, that's for sure!

It's really no big deal as you navigate through your life - it doesn't really affect too much. But after years of extra iron, it accumulates in your organs and joints, and can eventually cause death. Yikes, death is not a good side effect, if you ask me. The other side effects aren't that great either - liver damage or cancer, heart disease, diabetes, endocrine and sexual dysfunction and arthritis. The effects are broad, and can look like other problems, so it is essential that you are genetically tested for this disorder, especially if someone in your family has it.

Just some of the problems you can get.

The symptoms are pretty vague too - fatigue (I know, you always think you are low in iron if you have no energy, but too much iron has the same effect. Trust me...), weakness, lethargy, joint pain (that's a wacky one - I get pain in my fingers and toes when my iron and ferritin saturation levels get high), mood swings, impaired memory, irritability and depression (sounds like peri-menopause to me....I am so very lucky to have all of these things to point fingers at). If left untreated, you can have bronzing of the skin and organ failure. I just had a venesection and felt like I had the flu before as I had let my levels get too high, and now I feel like a million bucks a few days after. It does make a difference. Another few days and my joint pain almost fully go away....until my iron gets high again.

For women, symptoms often don't show until later in life - this is about the only good thing a period is for - getting rid of iron. And it's a bonus for those of us that weren't going to use our female organs for the traditional reasons. If only they figured out a way for me to have kittens.....but I digress.

Oh, yes please!

Fortunately it's all very treatable. I go for regular blood tests to monitor my iron levels with a thorough iron study (iron, serum ferritin, ferritin saturation and transferrin...sometimes my iron levels are normal, but the other levels are high) and then I have venesection (also known as phlebotomy) every 3-5 months. Venesection is just a fancy term for taking out your blood. I suppose in the olden days they would use leeches. Or vampires.

Thank goodness I don't have to do this!

Treatment is easy....so you would think. Unless you have a problem with having your blood taken.

When I first gave blood through Red Cross in Canada, I had an adverse reaction - I fainted and had a small seizure. I came to with four faces staring down at me, an utter feeling of panic in my chest and the rock solid feeling that I had peed my pants. I hadn't, but it felt like it. Everyone else donating was staring too - so much for keeping a low profile.

I was informed at the time that it was probably best if I did not donate blood as my body doesn't handle it very well. No worries, I can give it a miss if I have to.

Fast forward a few years to my mother's diagnosis of haemochromatosis and the recommendation that I get tested. And of course I had it. I take after my mother in SO many ways, this was just one more to add to the list. At the time my iron levels were normal, so it was recommended that I only monitor my blood and not worry about anything else.

I'm not sure the Customs Officials would have this sense of humour.

Once I moved to Australia, it was then recommended that I start regular maintenance venesection to ensure that no damage could occur. I won't lie, I wasn't happy and did relate my bad experience to my doctor. Sadly, this adult had to take her mummy with her to her first venesection to hold her hand. The doctor that I had was very good and it was decided that I would have a less than standard amount of blood removed. All good, my body seemed to handle that.

Every drop counts

I always considered it to be a waste that my blood (which is Type O) was not used. The Red Cross changed their rules over the years to allow those with haemochromatosis to donate. This was a good move as it is a regular supply of blood from a large population. However, Red Cross told me that they would only take the standard amount. I loaded up on fluids and food before I went and seemed to manage for the first couple of times. Then I almost fainted. And the next time I did pass out (and had to relive the joy of waking up with faces peering down at me and everyone else staring wide-eyed while I scrambled to check if I had peed my pants....I did not.). After the staff made several phone calls to the powers that be, I was told that it was best if I did not come back. Bugger. So back I go to a pathology lab that does the procedure and my blood gets disposed of.

Or Iron Woman

All jokes aside, it can be debilitating for those that have not been diagnosed, and often frequent venesections (once or more per week) need to be done to get the iron levels back in a normal range. This can suck all the energy out of your body while the iron stores are dropped to below normal levels. It is much better to be diagnosed early when you can treat it and avoid the damage to your body. If you are going to get a genetic disorder, this is definitely one of the better ones to have, in my opinion. Easily treatable and damage can be avoided. Can't ask for more than that (unless I go back to the kitten thing, but I get told I bring that up much too often...sigh!).