Why Being a Haemochromatosis Patient Can Save Lives

Image Courtesy of NHSBT

The treatment for genetic haemochromatosis is a regular blood removal process called venesection. Whilst this may sound scary, it is the same process as a regular blood donation, except the blood is discarded.

When patients find out that their blood is being discarded, the question that arises is – “I wish I could donate”.

Donating blood is often something that haemochromatosis patients want to do, and often they are told this is not an option for them.

However, the truth is that haemochromatosis patients can indeed donate blood.

Haemochromatosis patients just have to have finished the initial “de-ironing” phase of treatment and be in the maintenance phase and meet NHSBT criteria for blood donation, which is then the same for the general population.

NHSBT answers why haemochromatosis patients aren’t able to donate blood in the initial treatment phase:

“Haemochromatosis patients are deferred from donating blood whilst undergoing initial treatment because during this phase patients require more regular blood taking from the hospital consultant to monitor the patient’s response and screen potential risk of organ damage. Once the patient has become stable in their medical condition they are able to donate blood at any NHSBT donation centre.”

A spokesperson added, “In addition, all blood donors undergoing investigation or treatment are deferred as a potential risk of infection either to the donor or the donation. Safety is at the forefront of everything NHSBT does and they are directed by the national guidelines and testing that are in place to protect both donors and patients.”

More information is available here: information for donors with haemochromatosis

Here are some of the myths de-bunked about haemochromatosis and blood donation.

Myth:

“There is something wrong with your blood, so it would be dangerous for you to donate”

Fact:

Haemochromatosis is not a blood condition, it is a genetic condition, and the iron binds to the organs and is not stored in the blood. There is nothing wrong with the blood of a haemochromatosis patient.

Myth:

“Donating blood instead of venesections is a really difficult process to start.”

Fact:

The process is really easy, once in maintenance, the patient can self-refer by calling the National Contact Centre: 0300 123 23 23 and they will be sent a form to fill in and send back. As long as there are no other complications, the patient can call and book in for their blood donation.

Myth:

“I will have to wait an incredibly long time for a blood donation, and I can’t donate as much as I’d like to in order to keep my levels down.”

Fact:

In the maintenance phase of a patient’s treatment, blood removal does not have to take place as often as in the de-ironing phase. Also, when becoming a donor as a haemochromatosis patient, you are allowed to donate as often as 6 weeks, you just have to call 0300 123 23 23 to make the booking instead of filling out the booking form online.

This process actually makes donating blood easier for haemochromatosis patients.

Important things to remember

Donating blood instead of venesections means that patients’ iron levels won’t be checked, so every now and again it is recommended to book into a venesection.

Haemochromatosis patients will have to call the National Contact Centre: 0300 123 23 23, every time they wish to donate: instead of booking online for a donation, as that will allow them to donate blood more frequently than the rest of the population.

Haemochromatosis patients can donate, but they must be in the maintenance phase of their treatment and meet all NHSBT criteria.

So most patient’s saying, “I wish I could donate” – you can!

For the clinicians unsure about what the donation process looks like for haemochromatosis patients, they can indeed donate.

This is a win-win-win situation for the NHS, for patients, and for those receiving blood donations.


Notes

Please note that this information is based on blood donation in England, and that donation practices in relation to GH may differ in processes depending on the country you are from.

Haemochromatosis/GH is a genetic disorder causing the body to absorb excessive iron from the diet. Characterised by joint pain and disease, chronic fatigue and weakness, cognitive and psychological difficulties, sexual health issues, skin problems, abnormal liver function, diabetes, and cardiomyopathy. Iron overload can be fatal. It is usually easily treated if diagnosed early.

If you believe you have haemochromatosis or any other condition, please talk to your GP.