Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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update

mhoughton05
mhoughton05
hi everyone completed my 3rd venesection last week and ive just been to see the heamatologist my ferrriten was at 4400 which was a bit worrying and its been a long six weeks being tired and not eating certain foods but its down to 1825 which is great got 4 more to do now, but its been helpful just being in this group with people with the same condition as me thanks mark
deleted_user
deleted_user
Cool!
DougL
DougL
Just for your info, it took weekly phleb's for me to get from 1350 down to 50, which started in May of 2013 and continued to January 2014. I suspect you will need more phleps than you might think.
mhoughton05
mhoughton05
Hi doug yeah I thank you for your info interested in how long it mite take and you have answerd it. Was getting excited about the result I only found out in june and its on my mind every day thought by september it mite be down to under 300. Dont fully understand how serious it may get but I did read about people losing their lives thanks mark
Stevewmarsh
Stevewmarsh
Hi I was diagnosed earlier this year after years of visiting teh doctor with things tehy could never get to the bottom of.
Have a look at the UK Hemachromatosis website:-
http://www.haemochromatosis.org.uk/
There is a lot of good info on there, also check out the Canadian society website as they have a lot of good info:-
http://www.toomuchiron.ca/
In am reading a couple of good books about the conditionthe "The Iron Disorders Institute Guide to Hemochromatosis" and "The Bronze Killer" by Marie Ward. this details the condition and its effects on a family, I think that Marie set up the Canadian Hemachromatosis society after she found out about the effects that it was having on her family and the lack of knowledge about it, even today so many doctors seem to be so unaware of it.

Take care

Steve