SalfordOnline.com reader, Suzy Makin contacted us this week to let us know about her campaign to make people aware of an illness called genetic haemochromatosis which affected her partner Graham.
Suzy has appeared on BBC Radio Merseyside to let people know about this condition and here is her story.
Fatigue, arthritis, diabetes, cirrhosis, bronzing of the skin, abdominal pain and cardiomyopathy.
These can all be caused by undiagnosed, untreated iron overload or genetic haemochromatosis (GH). Iron builds up over time damaging vital organs and joints and causing any combination of symptoms.
Although GH is one of the most common conditions in Britain, our story is rare in the sense that Graham was diagnosed early. His only symptom at the time was extreme fatigue; I went to the pharmacy for various tonics containing iron and vitamin C.
And so I unknowingly began poisoning my husband – iron is toxic to someone with genetic haemochromatosis and in addition vitamin C increases the absorption of the iron.
It was later, whilst investigating an unrelated issue, that his iron levels were found to be high and he was diagnosed with GH.
We joined The Haemochromatosis Society and also the North West GH Support Group where we learnt so much.
Through these groups we met far too many people that were diagnosed late – many with serious symptoms who have had to endure hip and knee replacements, liver transplants, insulin dependence, and so on.
All this made me realise how fortunate we had been that Graham had been diagnosed early, and made me determined to try to ensure that more people are diagnosed early too.
I began visiting local pharmacists, educating them on the danger of recommending these tonics without checking iron levels.
After visiting 50 Pharmacists I realised that this was not practical – I would never be able to reach every pharmacist alone.
I then approached the Local Pharmacy Committees who agreed to publish articles in their newsletters.
Meanwhile Graham was having weekly venesections (blood lettings) until his iron levels were reduced to a safe level. also, as this is a genetic condition, Graham had to inform his close relatives so that they could be tested.
Since then our “Awareness Campaign” has snowballed. I have joined the Committee of the North West Group and we are getting the message across to other healthcare professionals such as chiropractors and physiotherapists. I’ve organised talks at Carers’ Centres and had articles published in health related magazines.
Graham is doing well, his venesections are now three monthly, his siblings’ and children’s iron levels are at normal levels and they will be regularly monitored.
I hope and pray that in the future more people will have the positive outcome Graham has had.
