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
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.