Hemocromatosis

Hi, not sure I can be of help; but regretly my brother died (aged 54) last week due to hemacromatosis. I have little information because he had hidden information to us in order to avoid concern in the family, but as far as I could know:

-strict diet and exercise is highly recommendable

-if the disease is found at time, it can be controled (supposedly one liter blood is to be extracted once a year, without reposition)

My brother was too late diagnosed correctly. He never drunk alcohol but doctors didn't believe him.

Rds

Luis

I found out I had hemocromatosis when I was 23 years old, I thought I was lacking Iron because I was tired all the time, but infact found out I had to much iron.I have never been told anything about it I was just told to watch my meat intake.

Now aged 33 years old with 2children, I have pains in my stomach, my bones ack and after reading about the seriousness of bone cancer, liver cancer Im feeling kind of scared to see the doctor now. Recently meeting my real father I have found my uncle has luchemia, and another Lung cancer and one just died of a blood desease.

Im upset the doctor didnt tell me more, its sounds like a terrible thing to have

From Lisa Bacon

Hi, I was looking up info on this wondering if it's a possibility my husband may have it. 

There was an interesting program  in regard to this last night on The Learning Channel on TV. It took forever for the man to get it diagnosed and now he's on a medication--I can't recall the name and donates blood (it's something to do with bloodletting--no, this wasn't a joke!) You might try going to the Learning Channel's website or contacting them to see if you might be able to get a transcript or info on the program that was aired. The date was Sunday, July 13, 2008 in the evening on the program called "Mystery Diagnosis". Hope this might help you

Hello! Go to this website: http://www.cdnhemochromatosis.ca/  it has great info and a discussion board where people with this disease and drs discuss it. I  was diagnosed with this 3 years ago (39 female)...and both my brothers have it. You need to keep the iron levels in your blood in a specific range which can be done by donating blood regularly. I just have a standing order at the clinic to get my blood tested monthly and if it falls into a higher range then the dr calls me and I go get 1/2 litre - 500 mls taken out. Frequency is different for everyone but I usually go every few months. There is no medication but eating healthy, limiting red meat and alcohol is important and do not eat sushi especially raw shellfish like oysters as there is a contaminent that they frequently carry that may only cause minor flu like symptons ina regular person but will kill a person with high iron in their blood...not to be dramatic, just avoid. The best thing is to see your dr, ask for monthly blood test to monitor your iron levels and donate blood as often as possible, and exercise...very common genetic disorder..and is not more common in one gender over another...they believe symptons show up faster in a male due to females menustration (losing blood monthly)but that is ridiculuous because often females with this disease have very light periods so they don't lose enough blood to make a difference in their iron levels. 

All the best...Cheers...Susy ;0) 

Just got back from the cancer doctor. I was diagnoised with hemocromatosis  Ive been telling the doc's this is what i had ... I hurt so bad I want to scream I take pain meds and they only lasr for about 1 hour... The cancer doctor said I don't know why you hurt this bad go back to family doctor ... Real funny cause family doctor said i had fibromyalgia which I knew that was not it Please help  if any one can?

hola! yo no escribo ingles pero lo leo  yo! soy una mujer de 32 anos de edad que sufre de lo mismo y esta  sufriendo por todos los! incombenientes de esta enfermedad y por si fuera poco tengo que  aguantar .los mareos,depresion, y dolor abdominal,tanbien cambio de color  como  gris  oscuro en  mi piel  y las manos  cuando tengo mucho hierro en la sangre/ es una enfermadad muy compleja y desgastante.................................... gracias 

Hi, my son found out he has it several months ago.  His liver enzymes were 2,500.  Normal is between 250-500.  They were taking blood from him once a week but his is now in the proper range.  He will have to go every three months now.  He had no idea he had it.... no symptoms whatsoever.

I had been diagnosed with this disease 8 years ago. I'm glad everyone is saying that it hurts , no one believe me. This past May I had a liver biopsy, now I have fat in the liver is very difficult to take care his ; foodis your enemy. Sorry I'm not a pessmist ,but it had been diffucult for me.

Luisa