Monday 5 November 2012

M.E. Fibromyalgia and Hemochromatosis?



As Matter of Interest? M E and Fibromyalgia sufferers

As a matter of interest I would like to know if any Fibromyalgia or indeed M. E sufferers have ever been tested for the HFE gene? And I will make a point of trying to find out. Similarly, maybe as well as hemochromatosis maybe I also have M.E or fibromyalgia. I suppose it’s possible. Or, it has just occurred to me; is it just that not enough research or tests have been carried out on those suffering ME & Fibromyalgia to see if they have hemochromatosis?  I would love to hear from anyone on this.

It makes me so angry when I read, courtesy of our NHS.UK website, with my comments in red

“Screening

Routine screening for haemochromatosis is not offered by the NHS because it is a relatively uncommon condition (So does that mean it is not worthy of screening, and why not create more awareness!)

Who is affected

Haemochromatosis is uncommon in general terms, although it is one of the most common genetic (inherited) conditions in England. (Slightly contradictory, don’t you think?)

As many as one person in 200 may be affected. (In my estimate that is a high percentage. Yet it isn’t considered worth automatic screening?)

Symptoms usually start around the age of 40 in men and after the age of 50 in women. Symptoms in women are delayed because their iron levels are reduced when they have a period. (YES but surely getting the symptoms then mean that there is now a very good chance that they may have already developed some serious problems because they were not offered the chance to be screened earlier, bearing in mind probably 99% of people haven’t even heard of it?)

Haemochromatosis is most common in people of white European ethnic background – particularly people of Irish descent. (Oh well that’s all right then!)

Prevention is always better than cure in my book and the very destructive effects of haemochromatosis, can take control of your life if you are not tested for this earlier rather than later.

4 comments:

  1. Im Irish & I have Haemochromatosis & if I'm honest I'm offended by your comment!!

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    1. (Pretty sure she was being sarcastic and indicating that just because hemochromatosis is most common in certain populations doesn't mean it's okay that it's not being commonly screened for. She's defending you. :)

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  2. I suffer from M.E. and have recently been diagnosed with Hemochromatosis. I started to have venesection but this has caused me to have a bad M.E. relapse. I think this is because M.E. is an illness that affects the CNS. I have had to stop treatment.

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  3. I've been diagnosed with fibro and CFS and I'm currently waiting to get my hemochromatosis test results back--hemochromatosis runs in my mom's family.
    (As an American) I think the NHS are probably trying to say that even though hemochromatosis is relatively common, it's not quite common enough to be ROUTINELY screened for, like breast cancer. It can also be hard to confirm (from what I understand), so the screening is more difficult than most routine screening. So I get why they don't do it as routine screening--but I also think that it should get more publicity than it does, since most patients/doctors (at least here in the US) don't think to get people checked for it when they're showing symptoms! Especially in the UK, since the UK LITERALLY LEADS THE WORLD in genetic hemochromatosis cases!!! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1050911/?page=2

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