A young Kildare woman has opened up about her experience with Ireland’s most common genetic condition, saying she first felt the symptoms of it when she was just 16 years old.

Alice Kelly, now 22, is a baker who has millions of followers across various social media platforms under the name From The Scratch Bakery. Last year, she was diagnosed with haemochromatosis, which causes the body to absorb too much iron from food – over time, the excess iron can build up in vital organs, potentially leading to irreversible damage if left untreated.

“I started to have symptoms of haemochromatosis before I even knew what the condition was, when I was probably around 16. I was getting random abdominal cramps, and I just put it down to maybe anxiety for the upcoming Leaving Cert,” Alice told RSVP Live.

“I was then getting finger pains, and that’s something you don’t really think of as a symptom of anything. I was in culinary and baking school at the time, so I put down the pains in my fingers and stomach cramps to anxiety, but I wasn’t ever really anxious, so it was two symptoms that I was putting down to something that didn’t really exist anyway.”

Alice later saw a doctor, who tested her for anaemia. When the results came back, her ferritin levels were ‘alarmingly high’ – they should have been below 30, but they were over 300.

She then had a blood sample genetically tested, which came back positive for haemochromatosis.

“It is fully genetic; your parents both have to be carriers of the gene. But it is very prominent; one in five people in Ireland is thought to have it.

“Usually in women, it is diagnosed after menopause, because we lose the menstrual cycle and we stop losing the iron that is building up. For men, they get diagnosed much younger, so people think it is more men who have it,” she explained.

When asked how she felt about receiving the diagnosis, Alice said it was ‘such a relief’.

“I was thinking all these years, maybe it was to do with my mental health because of the chronic fatigue that comes with the condition. You feel really lazy, but then again, you can’t do anything about it; you kind of feel horrific.

“Especially with the abdominal pains, they weren’t stopping me from living my life, and the pain in my hands was kind of taking away the enthusiasm that I had for baking. So being told there is a reason for it and it’s not all in your head is just incredible.”

Luckily, haemochromatosis is treatable. Alice went through 13 venesections over the summer, which are carried out the same way that a blood donation is. Every two weeks, she had a pint of blood drained from her, which then made her body utilise its excess stored iron to produce new red blood cells. This reduces systemic iron overload and protects vital organs.

“You really start to feel better after a couple of venesections. I actually haven’t had one since last September, but I had one last week and already feel a little bit better. My ferritin levels dropped to 56, which is probably the lowest my iron has ever been, so we left the venesections for a while, especially because it is kind of exhausting. Then my levels went back up to the 80s, so I decided to get another one.

“It was nice having some time off, but I was actually quite happy to go back and get one done because of how much better I feel afterwards.”

Alice is raising awareness of the genetic condition through her social media platforms and as an ambassador for the Irish Haemochromatosis Association. She is urging people to get a simple blood test if they feel something is off, rather than trying to treat it themselves.

“Because it has such similar symptoms to anaemia, everyone’s first protocol is to take an iron tablet, which is really, really harmful for people with an iron overload like myself. I’m very lucky I chose to get a blood test,” Alice said.

Haemochromatosis is Ireland’s most common genetic condition. Often referred to as the Celtic Gene, Ireland has the highest prevalence of the condition in the world, with around 1 in 5 people carrying the gene linked to iron overload and approximately 1 in 83 genetically predisposed to developing haemochromatosis.

The condition causes the body to absorb too much iron from food. Over time, excess iron can build up in vital organs, including the liver, heart, pancreas and joints, potentially leading to irreversible damage if left untreated. Serious complications can include liver disease, heart problems, diabetes and joint damage.

Despite how common it is, haemochromatosis is often missed because the early symptoms can be vague and easily mistaken for stress, ageing or general fatigue. Common warning signs include persistent tiredness, brain fog, abdominal discomfort and joint pain, particularly in the knuckles, sometimes referred to as the ‘iron fist’.

The Irish Haemochromatosis Association (IHA), the only registered charity in Ireland dedicated to supporting people living with haemochromatosis and their families, is urging anyone experiencing symptoms to speak with their GP about screening for the condition. Initial screening involves a simple iron panel blood test to measure iron levels.

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