Long-distance runner Ruth Jones knew the aches and pains she was experiencing went beyond the signs of natural ageing, yet it took nine months of tests before she was finally diagnosed with haemochromatosis.
The mother-of-two from Stamford, Lincolnshire runs up to 70 miles a week and was seeking an explanation for her plummeting energy levels and slower speeds.
“I was feeling exhausted all the time. I was finding running much harder, for no obvious reason. It went well beyond what other runners experience as part of getting older,” she said.
The 38-year-old athletics writer first visited a doctor with symptoms of extreme tiredness and aching in September 2017 but was only diagnosed in May last year after a “catalogue of errors”.
“It seems to be a theme across the country. There just isn’t enough knowledge about the condition in the medical profession. I had to suggest that my doctor should consider it as an option,” she said.
Even once finally diagnosed via a genetic test, Mrs Jones found a lack of knowledge among hospital staff on how she should be treated.
“The first time I had the venesection treatment it was a total disaster.
The hospital wasn’t set up to deal with the treatment properly and staff didn’t know how best to prepare me for the bloodletting,” she said.
“I didn’t know I had to drink litres of water beforehand, rest and eat more than usual. I’d been for a run that morning and I ended up collapsing in a corridor afterwards.”
After her collapse, she insisted on transferring to a specialist consultant and is now treated at The Queen’s Medical Centre in Nottingham, which has a dedicated unit.
Her iron levels are finally dropping.
“After a few treatments, I noticed the aches in my joints alleviating. I just felt more ‘with it’ and alive,” she said.
“It’s so important that understanding increases in the medical profession – people with haemochromatosis need diagnosis and treatment as early as possible, so they can go on living their life without potentially serious health complications.”
Mrs Jones’s husband Brian is now undergoing testing to see if he too has haemochromatosis, which would help indicate whether their daughters, aged 10 and 13, carry the gene or have the condition.