We have seen lots of questions on the support groups around some of the technical medical terms used to describe / explain GH / HH, so have put together a glossary, which might help. The full document can be found at:
You will need to register to download the full 7-page .pdf but we promise not to fill up your inbox ? Hope you find this to be of some use and if you think of any additions / omissions / clarifications please do let me know.
Please take a look at our downloads page, we have created a glossary of terms that are often used around hemochromatosis, covering the various types, the genetic, etc. Hopefully this will provide some insights into the ‘jargon’. Please feel free to suggest any additions and we will update and re-post, as appropriate.
TIBC, UIBC, TSAT%, SF – what does this all mean when I get my iron panel results? These terms can be confusing so we have tried to compile an ‘explainer’ that will, hopefully, make sense and get the message across. Feedback always welcome. Get the .pdf here
We have put together a gallery of infographics around HH, hopefully these will help to explain some of the ‘mysteries’, or answer some of the frequent questions that we see. We will be adding to this as we put together / collate more information.
Hemochromatosis is the most common genetic disease so far identified, with around 1 in 200 people severely affected. Most people with Hemochromatosis have mutations in the HFE gene, discovered in 1996. Hereditary Hemochromatosis is classified by type depending on the age of onset and other factors such as genetic cause and mode of inheritance.
Haemochromatosis might not be something you’ve heard of—even though a lot of people have this health condition— but it’s a widespread type of iron storage disease that causes your body to store excess iron at dangerously high levels. Over time and if left untreated or undiagnosed, the extra iron in your body can cause damage to several vital organs. Since many of the symptoms of Haemochromatosis aren’t unique to the disease (there are several other diseases that can cause the same symptoms) it can be difficult for a doctor to recognise the cause. Although it can be difficult to diagnose, Haemochromatosis is one of the most common genetic diseases ………
Well, this was new to me this week, I found out about a new form of Haemochromatosis that I have never heard of before, also known as Ferroportin. This is another genetic disorder, caused by mutation in the SC40A1 gene.