Another underdiagnosed disease

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For a long period over twenty years, I did not feel well, but did not know that I have both lipedema and hemochromatosis. In 2012 blood samples were taken, I had too high iron values, even in my iron stores. What that meant I did not know, my doctor did nor know or took notice of it. My mother said that grandmother had it and they emptied her on blood. My grandmother died in 1984 of liver cancer, probably by her hemochromatosis.

2015 and 2016 I was operated for lipedema. Before the surgeries, surveys and ultrasound radiographs were done on my stomach and ofcourse, my liver. Both times the same x-ray doctor told me I drank too much alcohol, maybe even was an alcoholic - why do I not stop drinking? I was both sad and angry. Then my ordinary doctor at the health center that it was going to said he coul take a test. This was done and it showed that I was not an alcoholic. The next doctor said that I had too high liver values, but that he did not know what he could do or could be done. Finally I read in the newspaper a study about liver for non-alcoholics, they sought participants. I called directly.

Doctor Söderström at St Göran's Hospital in Stockholm received me and I was tested. I was pleased to report that I was quite unique. With a weight of 100 kg, of which 62 kg in muscles. After a week I had to take new samples after liver biopsy. Then came the message - you have a inherited disease hemochromatosis. You will need to be emptied of blood 2 x 450 ml. There I am now.

Meanwhile we have had family celebrations and during this we understood that I am not the only one with too high values of iron. There are at least five who died in liver cancer or had too high iron values. It was a serious part of the party but necessary because we are many who are affected.

I have google and joined a Facebook group in Sweden. Now we are waiting for a patient group to be started where we can get more information. About the disease itself but above all maybe how we should live, what to eat, etc. Looking forward to it because the medical service does not seem to know so much about it.