Abstract
The large response to our 2017 patient survey, 2,000 in all, speaks to the need for people living
with haemochromatosis to have a voice. Whilst our knowledge of the biological mechanisms at
work in haemochromatosis continues to develop, little research is published on the impact of
the condition on people’s lives.
This report is the result of an independent expert analysis of the 2017 survey responses. It highlights the wide array of symptoms experienced by people with haemochromatosis. You will read that most of the people who responded reported debilitating symptoms including fatigue and
pain, particularly those for whom diagnosis was delayed. Yet, treatment is relatively simple. The
report provides support for its effectiveness in reducing some of the symptoms although for
some patients, treatment is a difficult and unpleasant experience.
In the report you will read about haemochromatosis patients’ experiences of healthcare. Whilst
most patients are satisfied with the information and support provided by medical specialists,
this is not the case with regard to their GPs. Greater awareness of recent guidelines for screening for haemochromatosis is recommended by the report authors, and we strongly support implementation of these guidelines in order to avoid delays in treatment and prevent irreversible tissue damage.
At HUK, our aims are to support those with haemochromatosis and those at risk, to educate patients, families, the wider public and healthcare community about the condition in order to raise awareness of haemochromatosis, and to stimulate research into the condition and its impact on
people’s lives. We hope that this report will contribute to all of these aims and, in particular, that
it will encourage earlier diagnosis and stimulate much needed new research.