As you may have figured by now, here at CelticCurse.org we are big believers in more widespread hemochromatosis screening. The cost of catching hemochromatosis early is way less than caring for someone suffering the effects of untreated hemochromatosis. So we were interested to read this article in The Scotsman, an excellent Scottish newspaper (note the spelling of haemochromatosis):
People should be routinely screened for a dangerous genetic which could afflict one in 200 Scots, a campaign group said yesterday. Described by some as the “Celtic curse”, haemochromatosis is a genetic condition prevalent in Scotland, Ireland and other northern European countries which causes iron to build up in the body.
The article goes on to describe how the head of the Haemochromatosis Society, George Scott, appealed to the Scottish Parliament to institute testing that could save lives. Apparently Members of the Scottish Parliament (referred to as MSPs) said that they will “ask health secretary Nicola Sturgeon to look into setting up a pilot in one health authority. This will help paint a better picture of the “cost benefits” and could lead to a national scheme.”
Which makes this a story to watch. If a study is done and if the numbers are good–meaning that the cost of treating victims was found to be far greater than widespread testing–it could make it easier for Celtic Curse advocates in other countries to push for screening.
{ 2 comments… read them below or add one }
I cannot agree more with this campaign. I have felt ill for eleven years and was never able to obtain a diagnosis until a random test was undertaken last year. I have been one of the lucky ones as my ferritin levels were treatable and there was no lasting damage. However, when my sister requested that my nephew was tested she was told he is too youang at 14. If he waits till he reaches 30 the damage may be done. Screening of babies should become the norm!!!
Thanks for the support Mark. Glad you have not had lasting damage. Anything you can do to spread the word would be much appreciated.
Sadly, the attitude your sister encountered with respect to your nephew is all too common. It is hard to believe just how little most doctors know about hemochromatosis, particularly since it is the most common deadly genetic defect in America. My guess is that 9/10 physicians don’t even know that simple fact. We have found nurses tend to know more about this condition than most doctors.
Your nephew should definitely have his iron levels checked at least once a year to detect any iron loading.
Genetic testing of newborns is a subject we hope to write about here as soon as we get a chance.