Nadine battles blood condition with a will of iron

Nadine Carnie could be described as a pocket sized strong woman.

For not only is she a lone parent who runs her own successful business, she faces a daily battle with a condition that few of us have even heard of.

Haemochromatosis is a hereditary disease caused by excessive intestinal absorption of iron resulting in an increase in total body iron stores.

And while we are told that iron is good for us and we need more of it, when excess iron accumulates in tissues and organs it disrupts their normal function.

The organs most susceptible include the liver, adrenal glands, heart, skin, joints and pancreas.

The first signs that pint sized Nadine was a sufferer was when she had a persistent hip pain that refused to go away.

That, coupled with chronic tiredness and fatigue, left doctors baffled.

Perhaps because haemochromatosis is such a complex condtion and manifests itself in many different ways.

Nadine, who is mum to Bridget, (11) said: "After the diagnosis which took some time to get, I did struggle to come to terms with it and what it means for me."

While we are told to tuck into iron rich red meat and green vegetables, those are the very things that Nadine must avoid.

Fatigue, arthritis in her hands and joint and bone pain are just some of the numerous symptoms of the disease that Nadine, who is 42, suffers from.

A talented chef who runs William's, her own cafe/deli, in the heart of Manchester, Nadine will not let the condition dictate her life.

She is regularly up at 4am to get ready to travel from her home in Burnley to start the working day.

It may mean she is in bed at 7pm in order to be fully rested but that is the price she is happy to pay to live a "regular" life.

She loves spending time with Bridget, her little dog Teddy, and has a closeknit family and wide circle of friends whom Nadine loves socialising with.

Nadine, who is also a skilled cake maker, said: "I have the hereditary form of the disease with a faulty gene coming from both my mum and dad so I can just blame them for this."

Affectionately referring to herself and fellow sufferers as "rusties" there is also a theory that this deadly, but treatable disease, comes from Vikings!

Studies have shown it is found in greatest frequencies in regions that are known to be Viking settlements across Europe.

As so little is known about the condition Nadine is hoping to raise awareness of it and also promote fund raising into finding a cure.

Last year Nadine conquered her fear of heights to climb Ben Nevis with a team from the Haemochromotosis Society to help raise £17,000.

Nadine, who went to the former St Hilda's RC High School in Burnley, said: "I absolutely loved doing that, it was not something I ever dreamed or imagined I could have achieved but I did."

And she is now preparing to tackle the challenge of climbing Snowdon in 2018.

Known as the "Celtic Curse" the hereditary form of the disease is most common among those of Northern

European ancestry, particularly those of Irish descent.

In most cases, the parents of an individual each carry one copy of the mutated gene but do not show signs or symptoms of the condition.

Nadine's sister, Sara, does not have the condition and Bridget will not be tested until she is 18.

The vivacious redhead deals with her condition with a dry sense of humour, especially when it comes to the treatment known as venesection or the "interview with the vampire" as some sufferers refer to it.

The treatment involves regular removal of blood just as though the victim is a blood donor.

Every pint of blood removed contains about a quarter of a gram of iron.

After venesection the body then uses some of the excess stored iron to make new red blood cells. During the treatment the serum ferritin levels are monitored indicating the size of the remaining iron stores.

Treatment continues until the levels indicate minimal iron stores.

But this is treatment that Nadine will probably have to endure for the rest of her life.

She copes with it stoically and in a very down to earth and matter of fact way.

Nadine is lucky that none of her organs have been damaged by her condition which can also cause cirrhosis of the liver, diabetes, liver cancer, congestive heart failure and heart palpitations.

By taking care of herself, keeping fit and eating a sensible diet with just the occasional glass of fizz, Nadine is managing and managing very well.

New breakthroughs and ways of treating haemochromotosis are being found all the time and a cure in Nadine's lifetime would certainly be heaven sent.

The condition has its own facebook page where sufferers can share stories and offer each other support, advice.

The Haemochromatosis Society is also a source of support for people affected by the disease and it also encourages research into the condition and management of it.

The society also strives to educate the medical profession to make improve the rate and age of diagnosis. For more information go to http://haemochromatosis.org.uk/