Ailsa’s Story

Ailsa Davies was diagnosed with haemochromatosis eight years ago. Haemochromatosis is a genetic condition which leads to a build-up of iron in the body, and can cause a number of unpleasant symptoms, including fatigue and joint pain, which Ailsa commonly experienced until her condition was better controlled. There is currently no cure for haemochromatosis, however one of the main treatments for the condition is regular blood donation so that the body can regulate its iron levels through removing blood from the body. For many, blood donation is a choice, but can you imagine when donating blood that it not only benefits someone in need, but is life changing for yourself? The positive impact of blood donation that is demonstrated in this story is pretty amazing.

When seeking a diagnosis, one of Ailsa’s blood tests revealed that her ferritin level - which indicates the amount of iron in the blood - was above 400 mcg/L; a normal score for a woman is below 200 mcg/L. The initial impact of Ailsa’s diagnosis was quite significant, as to reduce the amount of iron in her body and work out the rate at which the iron was building up, she had to give a pint of blood at the hospital every two weeks. Once Ailsa’s ferritin level was reduced to 50 mcg/L - which took many weeks - the doctors were able to work out how quickly the iron was building up and how often Ailsa needed to give blood to keep her iron levels at a safe level and control her symptoms. After reaching what is called the “maintenance stage”, Ailsa continued to give blood at the hospital every four months.

Despite how often Ailsa was donating blood, until 2019 there was insufficient research around how safe it was for the blood donated by people living with haemochromatosis to be given to people in need of blood transfusions. This meant that every time Ailsa donated blood, it would go to waste. Thankfully, research has now confirmed that it is safe for people with haemochromatosis to give blood if they are at the maintenance stage and fulfil the other criteria that is applicable to all donors. This means Ailsa can now donate blood every four months at her nearest blood donor centre to manage her condition, and that her donation can be given to someone in need, which will have such a positive impact for many.

“I feel very happy that my blood can be put to good use. It always felt such a waste that the blood that was taken just had to be put in the clinical waste. It also makes me feel like I am giving something back for all the care I am being given to keep my condition under control.”

Ailsa’s blood type is AB+, which only 2% of the UK population live with. It’s so important that people with different blood types donate to ensure that everyone who needs a transfusion can receive as closely matched blood as possible. The change to the blood donor criteria for people living with haemochromatosis has a huge impact on those who might need a blood transfusion, as people like Ailsa who may have rarer blood types are able to help people in need, while doing something that also helps them to live a better quality of life.

We asked Ailsa if she had one piece of advice for someone who is nervous about donating blood. She sums it up perfectly: 

“Feeling nervous the first time is natural, but don’t let that put you off as it is such a positive experience. The staff are so well trained that they always put you at ease, take the blood efficiently and effortlessly, and look after you so well the entire time you are at the centre. I always come away feeling very pleased that I might be helping to save a life. Take that first step on the way to becoming a regular donor as you won’t regret it!”

We’d like to thank Ailsa for taking the time to tell us her experience of living with haemochromatosis, as well as sharing some fantastic advice for new blood donors. If you would like to book your next appointment, follow the link below!

References

NHS. Haemochromatosis. Available at: https://www.nhs.uk/conditions/haemochromatosis/. Last accessed: October 2022.

Adams P. Management of elevated serum ferritin levels. Gastroenterol Hepatol (N Y). 2008;4(5):333-4.

NHS Give Blood. AB positive blood type. Available at: https://www.blood.co.uk/why-give-blood/blood-types/ab-positive-blood-type/. Last accessed: October 2022.