Haemochromatosis is the UKs most commonly undiagnosed genetic condition. Over 380,000 people are at risk. It’s simple to treat, easy to diagnose. Without treatment people are dying of cancer, heart problems, diabetes, liver disease. Help us to reach over 25,000 people to raise awareness & save lives
It ran from 12:00 PM, 1 December 2020 to 12:00 PM, 8 December 2020
Registered Charity in England and Wales (1001307)
GH is massively underdiagnosed, directly affecting over 380,000 people, however the NHS is aware of just 20,000 people with the condition. GH can cause liver disease, cancer, heart disease, chronic fatigue, diabetes, severe joint pain, sexual health issues & neurological issues. Diagnosed early, it is manageable & not life-limiting. Symptoms of GH when presented to a GP are often mistaken for other conditions & patients can go years without diagnosis, sometimes sadly once it is too late!
The single largest obstacle to saving considerable resources, suffering & lives, is poor levels of awareness of GH amongst health professionals & the public. Our charity with the support of this funding are going to empower the public & healthcare professionals by running the biggest GH awareness campaign across 10 cities. This will take place in June 2021 on Genetic Haemochromatosis Awareness Week. This will increase awareness of symptoms, increase diagnosis, and ultimately save lives!
My brother in law suffered with ill health. His wife is a nurse. She had him cared for by all the top docs in the field. If only one of them had taken the appropriate blood tests, they would have been able to connect the dots. He was diagnosed the day before he died waiting for a heart transplant.
"I am very pleased to work with this fantastic patient society that does so much to support those with Haemochromatosis. The arthritis is a huge challenge for many and together with HUK we hope to improve this situation”
"There is a great deal of knowledge and expertise in the management of this very common condition in the UK but one of the greatest unmet challenges is channelling that knowledge so that patients ultimately receive better and more consistent care from well informed clinicians”.
Finally diagnosed in April 2014 aged 65 years after many years of symptoms and it appears 'pointers that were never picked up in three of the areas I lived in from the early 1990s to 2014........Aberdeenshire, Glasgow and Perthshire.
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