A Personal Insight to Haemochromatosis

I never imagined I would have a single thing in common with Ernest Hemingway; it turns out I have two.

The first is that we both make a living from writing. Less eloquently in my case!

The second is Haemochromatosis.

I know that is a big olʼ mouthful of a word, with very little hint as to what it means, other than some kind of blood thing.

Which is exactly how it was described to me the very first time I heard it. Followed by “look it up, itʼs quite serious.”

And I did just that.

What Is It?

Haemochromatosis is a condition that causes the body to absorb and store excess iron, leading to iron overload and potentially unpleasant symptoms.

If treatment is needed but not received, this can damage many parts of the body.

For me, my Haemochromatosis is genetic (GH), and from what I have read, Ernest was probably the same. I will leave you to read Mr Hemingway's story on your own, as it is quite sad.

I was diagnosed in 2022, almost by accident, and it has taken me this long to wrap my head around it and build up the courage to share my experience.

Ultimately, the importance of raising awareness of this condition was the deciding factor.

So here goes…

For most of my adult life, I have been back and forth from my GP with two continuous symptoms: fatigue and joint pain.

Every time, I was given a different answer for why. I eventually stopped bringing these up.

I started to feel like I was imagining it; it was all in my head, it was just how bodies function. I believed and trusted everything I was told.

When I found out about Haemochromatosis and that I would need to be tested, everything clicked into place. I knew what those results were going to say.

It was a long seven-week wait, but when my nurse read out the words on the screen, there was an overwhelming flood of emotions and feelings: vindication, relief, panic, anxiety, confusion, anger and also peace because I f inally had an answer.

I walked out of the surgery numb. Phoned my husband, the tears fell and worry set in.

I didnʼt know what step was next, and what did my future hold. Did I even have much of a future?!

Help and Support

Thatʼs where Haemochromatosis UK came to the rescue. The wealth of information they provided, in a format I could understand, calmed my racing thoughts.

Not long after I received my diagnosis, I signed up as a member, giving me access to a whole bucket load of help and advice.

I asked Haemochromatosis UK to explain their work for this article. Philanthropy manager Neil Irwin obliged.

“We provide support for people affected, work to raise public awareness and educate GPs, nurses and other healthcare practitioners about this all-too-common condition, which is still diagnosed too little and sometimes, far too late, with tragic consequences.

“Although a small charity we provide a National Helpline and online resources to support people like Jenny who are recently diagnosed. We can provide reassurance and guidance on the next steps in terms of treatment and the implications for the rest of the family.”

Many symptoms can be clues to this condition. The most common ones are joint pain, fatigue, stomach pains and bronzing of the skin. People can have none, one, or all of them.

High ferritin levels in blood tests can also be an indicator of it. While most in the medical field classify it as a common condition, it is rarely known.

Prevalent in people with Celtic heritage, it is sometimes called the ʻCeltic Curseʼ for the damage it can wreak on a body.

Diagnosis and Treatment

The story behind how this genetic mutation evolved is (to me) quite fascinating.

Untreated, it can lead to cirrhosis, arthritis, diabetes and heart failure. And that's just the beginning of a scarily long list. However, if you get an early diagnosis and treatment, that can play a crucial role in potentially preventing this destruction.

Treatment is fairly simple; it doesn't involve chemicals or medications; it's a straightforward removal of blood - similar to donating.

Diagnosis can be difficult, even in us humans that have been symptomatic for a while, because the symptoms are not exactly specific and often overlap with many other conditions.

But being diagnosed and treated earlier could lead to a reduction in the many diseases our NHS treat in vast numbers.

Think of the strain that would relieve on our health services in the future!

Not only that, but the blood that is collected from our treatments would boost blood bank reserves.

I am very thankful that I was diagnosed a little earlier than average and have been able to get a headstart on my treatment.

Even if needles and I are still figuring out how to work together!

Accepting Rest

The staff on the Haematology ward at the Vale of Leven Hospital are all amazing with me and they make the process as easy as possible.

Most women are not diagnosed until after menopause, which is partly because we have a built-in blood-letting cycle, also known as menstrual periods.

But damage can still be done at an early age. I have diagnosed arthritis in my hips, and I suspect other joints.

I regularly battle the pain and fatigue this causes and try to let my body rest as much as I can.

It took me quite a while to not feel guilty about resting. There have been many internal pep talks!

However, it has been one of the key parts of managing this lifelong condition, and I now recognise the importance of RʼnʼR.

I could fill a whole magazine sharing the history of this condition and the knowledge I have gained in the past three years but the information I want to share most is this…

If anything I have talked about in this article resonates with you, please go talk to your doctor.

And then share what you have learned with as many people as possible.

You never know whose life it might change.

For more information visit haemochromatosis.org.uk or call 03030 401 102 (Mon - Fri, 12 - 3pm)