Haemochromatosis UK is funding a new research project in collaboration with Birmingham City University, studying nutrition and the role of vitamins during maintenance for people with GH. The grant – worth £20,000 – is being funded from the proceeds of the charity’s Vita Vibes food supplement, and is just one of three Fernau Awards in 2025. 

The project is being led by Dr Lewis Gough, Associate Professor, Nutrition and Physiology in the Human Performance and Health research group and will examine the experiences of patients undergoing venesection treatment—the most common approach for managing haemochromatosis. However, there is a significant gap in understanding what people with GH truly go through during this process and after reaching maintenance ferritin levels.

Alarmingly, many continue to suffer from symptoms like fatigue and weakness even after maintenance (ie, serum ferritin less than 50 mcg.L-), severely impacting their quality of life.

To date, no research has captured the severity or frequency of these symptoms in patients at this critical stage. This study aims to fill that void through in-depth focus groups with stakeholders, shedding light on the real challenges people with GH face.

There is an alarming lack of evidence to support patients in improving their quality of life once they reach the maintenance phase. This gap includes using effective monitoring tools for symptoms and quality of life, to create targeted interventions to manage the condition.

Research is needed to engage all stakeholders in identifying the best strategies for monitoring and supporting patients, particularly considering the complexities faced by haemochromatosis patients in maintenance. This issue is critical, as patients have identified symptom management and quality of life as a top priority.

Get Involved In This Research

Dr Gough is interested in discussing the proposed research methodology with Haemochromatosis UK members to gain our feedback, before the research starts in May.

There are three events available :

• Online : 22nd April,6-7pm (Microsoft Teams) - register online here
• Online : 23rd April,6-7pm (Microsoft Teams) - register online here
• In person : 25th April,1-3:30pm at Alexander Stadium, Walsall Road, Perry Barr, Birmingham B42 2LR - register to attend here

These events are free to attend, but you must pre-register using the links above.

This is an excellent opportunity to get involved in shaping this research, into an area which has previously been overlooked by academic researchers but which is so relevant to day-to-day life with GH. We hope you will take up this opportunity, if you are someone with GH living in the UK.

We are thankful for the support of The National Lottery Community Fund in England which enables us to engage in a wide range of family support activity.