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.
Im Irish & I have Haemochromatosis & if I'm honest I'm offended by your comment!!
ReplyDelete(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. :)
DeleteI 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.
ReplyDeleteI'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.
ReplyDelete(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