A RUGBY-based charity is spreading the word about a ‘surprisingly common’ genetic disorder in the corridors of power.
Haemochromatosis UK (HUK) was welcomed to Parliament by Rugby MP Mark Pawsey for the launch of its ground-breaking report ‘Living with the Impact of Iron Overload’.
Iron overload is caused by genetic haemochromatosis (GH), a genetic disorder causing the body to absorb an excessive amount of iron from the diet. The iron is deposited in various organs, including the liver and the heart, causing symptoms such as chronic fatigue, joint disease, skin problems, sexual health issues, psychological difficulties and – if left untreated – liver cancer and cirrhosis.
The report drew from the experiences of 1,998 people living with haemochromatosis.
The launch – intended to promote earlier diagnosis by raising awareness of the condition among front line clinicians and the public – was attended by policymakers, clinicians, senior representatives from NHS trusts, MPs and guests from across Europe.
Mr Pawsey said: “Haemochromatosis UK does great work in highlighting the challenges affecting those with genetic haemochromatosis. Because they are based in Rugby, I have known about their work for a number of years now and I was delighted when their Chief Executive, David Head, asked me to help host the launch of their new report in Parliament.
“I am very pleased that over 45 MPs were able to attend and find out more about this surprisingly common condition. I hope that we can build on the progress made by this report through establishing an All-Party Parliamentary Group for Haemochromatosis, which can help to raise this issue directly in Parliament.
“In the long term, we need a better understanding of this condition so that those with haemochromatosis are diagnosed earlier and get the support they need.”
HUK Chief Executive David Head said: “Haemochromatosis UK appreciates Mark’s support in hosting the event. We would not have been able to create such a prestigious opportunity to make our calls, nor to attract the attention of such an important audience, without Mark’s help.”
