Hemochromatosis...

My sister Marianne has several months ago been diagnosed with the genetic disorder called hemochromatosis. This is basically an overabundance of iron in the blood. This overabundance of iron settles into the liver and other organs and also affecrs the heart and the intestines. It is the liver that suffers the most and it can get badly damaged and make you very ill.

My sister's health had not been good for a long time but she had neglected to take care of it and ignored all sorts of symptoms. She did not accept any advice from anyone but then again her own docter wasn't much of a help eiither and didn't take her seriously enough. 

She had a lot of gastro-intestinal problems and for some time played with the thought that she might have an intolerance for lactose and gluten. This was really not her own idea but that of her daughter who saw what effect these foods had on her. My sister never made a serious attempt to give them up.

She developed other sorts of health problems and finally the situation could not be ignored any longer. After all sorts of tests, the diagnosis was made but it was discovered that the disorder is in a very far advanced stage and that nothing can be done about it. A liver transplant won't help her because there is too much damage to the other organs. 

As a result of the liver damage, she has also developed liver cirrosis which causes a whole set of health problems on its own.

Marianne is on a whole regime of medicines to fight the worst symptoms. She is very sucseptible to infections and just already had one. She was found nearly incoherent by her daughter and best friend with a high fever and completely dehydrated. She was put on a course of antibiotics and is doing better now but has not recovered to the state she was in before she got the infection.

She has less than a year to live but we think she won't even last that long. My younger sister Erica and I went up north to see her earlier this month and we were shocked when we did. She looked so very ill. 

Marianne's daughter and Erica and I will have to have a DNA test to see if we carry the gene for hemochromatosis because it is inheritable.

After talking to my niece yesterday and hearing more about Marianne's earlier symptoms, I have decided to make a doctor's appointment as soon as possible. I am, and have benn, having a lot of gastro-intestinal problems and especially with lactose and gluten. I have removed them from my diet. I do better now but basically any kind of food gives me some problem to some extend. I have also lost quite a bit of weight lately although that has not been my intention.

Because of Marianne's condition, we have all done a lot of reading about hemochromatosis and liver disease and the function of food in our bodies. Marianne is on a special diet that is supposed to be of the most benefit to her. I actually think that the three of us know more about all the subjects than Marianne does. 

I have only discussed my concerns with my niece and won't talk about them with anyone else until I find out more. Well, now I'm disclosing them to you of course. I had to tell this whole story to someone. It is a lot to walk around with.