Dundee woman's shock at 'Celtic Curse' diagnosis - the most common genetic condition in Scotland

The Courier

06-06-2025

Roz Langlands has been very active throughout her life so when she felt completely exhausted after walking round the shops in Dundee she knew something was wrong.
The 71-year-old, who lives in the city, not only felt very tired but she also noticed her mood had dipped.
Initially she put it down to the stress she and her husband Gary had experienced after getting building renovation work done on their home.
But the exhaustion didn't go away.
'Around February/March 2023 I was feeling very tired and really low,' Roz explains.
'But I thought it was just after all the hassle we had had with our home.
'Then one day Gary and I were walking from the old Marks and Spencer's to the Overgate and it left me exhausted.
'I am not keen on going to the doctor – I just thought it might get better on its own as time went on but it didn't.
'So eventually Gary persuaded me to go.'
In November last year at Hawkhill Medical Centre Roz had four or five lots of blood taken to test for various things.
'The results came back showing there was too much iron in my blood,' she says.
'My GP then took another blood sample to go to a specialist lab.
'It was tested and when it came back it confirmed I had Genetic haemochromatosis (GH).
'It was a shock and I couldn't get my head round it. All I could think was what, why, how?'
Genetic haemochromatosis is Scotland's most common genetic condition. It is a disorder which causes too much iron to build up in the body.
The iron overload condition, which is caused by an inherited genetic mutation, is common in people in Scotland and Ireland who have a Celtic background.
This is why it is often referred to as the 'Celtic Curse'.
If untreated a build-up of iron in the body damages vital organs over time.
It can also cause life-threatening complications including liver disease, cancer and heart disease.
Symptoms include: Feeling very tired all the time, brain fog, mood swings, depression and anxiety, weight loss, weakness and joint pain, especially in the fingers.
It is believed around 1 in 113 people in Scotland are pre-disposed to the condition, but fewer than 1 in 20 have been diagnosed.
Dundee's Roz was taken aback when she was given the 'Celtic Curse' diagnosis because she had never heard of it before.
And she wasn't aware of any cases of the disease in her family.
She says: 'I remember thinking how can this possibly be?
'Because I had never heard of anything like this in my family I don't really know a lot about it.
'My mum passed away when she was 83 and had dementia for about 20 years.
'But both my parents had the mutated gene and passed it on to me.
'They must have both been carrying the gene for me to have the condition – that's what the haematologist said.
'It's the most common genetic condition in Scotland and there are a lot of people who could be carriers and they don't know.'
Roz believes the amount of iron in her body could have been building up post-menopause over the past 15 years.
The normal range for ferritin – a protein that correlates with the amount of iron stored in the body – varies by biological sex.
For men 'normal' is located between 30 and 300 mcg/l and for women it is between 30 and 200 mcg/l.
Once levels hit 1,000 it can start affecting the organs.
'I was told my levels were at 2850 and as a result my liver is damaged because it is full of iron.
'The body then looked for other organs to start storing it.'
There's currently no cure for haemochromatosis.
But there are treatments that can reduce the amount of iron in the body and reduce the risk of damage.
The two main treatments are venesection (phlebotomy) and chelation therapy.
The treatment Roz has been having is a regular venesection which is similar to blood donation.
It is a procedure to remove blood to bring iron levels down.
'Every fortnight I have to go to Dundee Blood Donor Centre to have blood taken out until my iron levels come down,' she explains.
'I started off having 200 mils taken out. It's now up to 300.
'What happens is the body naturally replaces that blood which effectively dilutes the iron.
'I am still in the early stages of the treatment – it's been about three months now.
'So far it hasn't made a difference to how I feel.
'But we spoke to someone else having the same treatment and he said it was more than six months before he started feeling better.
'I am hopeful it will help in the long run.'
The former PE teacher has been very active throughout her life.
But now, due to having haemochromatosis, she struggles to walk any distance.
'Also if I do anything in the house – even slight exertion for ten minutes – I need to lie down afterwards.
'If I go to meet someone for a coffee or go out to dinner with my school chums, the next day I am wiped out.'
Roz has also had to change her diet – this includes cutting out alcohol.
'I am not allowed to drink anymore (alcohol consumption can cause further liver damage).
'And I am not supposed to eat any red meat because it has iron in it.
'What I can have is chicken, fish, eggs and leafy greens.
'But I have to be careful about all sorts of foods and eat things which have a low iron content.'
Roz is grateful for the support of husband Gary, 68, who is chairman of Dundee Alexandria Twinning Association.
He has helped her around the house when she has struggled with fatigue.
'I don't think I could have coped without his help,' Roz says.
'He has always cooked though and does the majority of things – apart from ironing.
'I try and do a bit of housework but he will tell me to go and have a lie down. I spend a lot of time sitting or lying down.'
Roz feels passionate about trying to raise awareness of Genetic haemochromatosis because if caught early, organs can be prevented from being damaged.
'If you find out you have the condition early enough there is treatment available to stop your iron levels from going up,' she explains.
'They can then be brought down before they start damaging your organs.
'It can be life shortening if you don't catch it early on.
'If I had caught it earlier I might have only needed two or three months of treatment.
'Or if my parents had known, I might have had genetic testing which would have caught it earlier.'
She adds: 'Apparently 90 per cent of people who have this condition are unaware.
'This is why I just want as many people as possible to know this disease exists.
'So that if they have some of the symptoms, they can get tested and have treatment before it causes irreparable damage.'