A Blackpool woman is leading the way in raising awareness of a little-known condition which affects thousands of people.
Marguerite Smith, from South Shore, has been suffering from haemochromatosis – a genetic disorder which causes the body to absorb too much iron – for more than 25 years.
The iron gradually builds up, mainly in the liver but also in the pancreas, joints and heart, and can cause serious tissue and organ damage.
The condition is now recognised as one of the most common genetic disorders, with one in 200 people likely to be at risk. The risk increases to one in 83 for people with an Irish or Celtic background.
Marguerite, 58, said despite this, the condition was still relatively unknown.
She said: “I first found out I had Haemochromatosis 26 years ago and I was lucky that it was diagnosed when it was because if I hadn’t have been I don’t think I would be here now.
“I had been suffering from almost constant mouth ulcers and went to see the GP on several occasions without much luck. I had even been prescribed iron tablets as part of the treatment which when you look at things on reflection sounds crazy.
“It was only when I was sent to a specialist at Blackpool Victoria that we got to the bottom of the problem.” Marguerite said her blood test showed she had an abnormal level of ferritin – a protein which stores and releases iron. Levels should be below 100, and Marguerite’s were 6,000.
Once diagnosed, the treatment consists of a regular removal of blood, similar to a blood donation, to help keep iron levels down. Without treatment, haemochromatosis can cause arthritis and joint pain, chronic fatigue, abdominal discomfort, neurological disorders and liver disorders.
Marguerite said: “There are still times when I am absolutely shattered and sleep a lot, but I still consider myself lucky because I had the early diagnosis and have been able to do what I can to get the right treatment.
“I would urge everyone who feels any of the symptoms on a regular basis to get a check.”
And Marguerite is using her experience to make people in the medical profession more aware of the condition, and has set up a support group for people in the North West.
Karen Morris, a staff nurse from the gastroenterology department at Blackpool Victoria Hospital, has been helping Marguerite to pass on knowledge of the condition to medical staff locally.
She said: “As nurses, it is in our interest to have some understanding of what haemochromatosis is and how it affects patients and family members within our community.
“When we think of iron-related health problems, the first condition that instinctively comes to mind is anaemia, which is caused in part by a deficiency of the mineral. But what many of us don’t realise is that a huge amount of people also suffer from the opposite problem of having too much iron in the system.
To find out more about the condition or the support group contact Marguerite on 01253 311060.