Rare Disease Day – Mark’s story

Date of release: 28 February 2025

In honour of Rare Disease Day, a grateful patient has shared his story and thanked staff who have supported him throughout his diagnosis.

Mark Hands

Rare Disease Day takes place every year on 28 February. It is a globally co-ordinated focus, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.

A rare disease is a condition that affects fewer than one in 2,000 people.

Mark Hands, who is under the care of The Royal Wolverhampton NHS Trust, was diagnosed with Haemochromatosis, an inherited condition where iron levels in the body slowly build up over many years. This build-up of iron, known as iron overload, can cause unpleasant symptoms. If it is not treated, this can damage parts of the body such as the liver, joints, pancreas and heart.

The 53-year-old, who works in insurance, said: "I was absolutely gutted to begin with when I learned I had Haemochromatosis. I had felt unwell for quite some time and was suffering with fatigue, joint pain, and memory fog, which had got me down.

“My condition was picked up during a round of blood tests at my GP surgery aimed at men of a certain age. Had I not been diagnosed, I honestly believe I wouldn’t be here today. I encourage all men to go and get tested when asked to attend a well man screening programme.”

Since his diagnosis, Mark has received ongoing treatment at Cannock Chase Hospital, which involves a procedure known as venesection (or phlebotomy), where blood is removed from the body to reduce iron levels. Mark has undergone more than 50 venesections, initially receiving them weekly for six months. He now continues with a maintenance schedule of one every 12 weeks.

Reflecting on the care he’s received, Mark said: “The team at Cannock Chase Hospital, especially Nurses Cara and Kelly, have been first class. They have been looking after me for the last 18 months or so and are two extremely dedicated Nurses who the Trust should be very proud of. I can’t speak highly enough of the care they have provided to me.”

He added: "I think Rare Disease Day is an excellent idea. While many of us are familiar with common illnesses and diseases, conditions like Haemochromatosis are rarely mentioned, and awareness is key to early detection and treatment."