The Patient Voice

Speech BubblesJoining The Haemochromatosis Society is one way in which you can add your voice, but there is a lot that can be done individually as well.

Talk about it!

Patients and their families can really help educate others about the condition. If you are affected, you can do this in a number of ways.

However, only do this if you are entirely comfortable discussing your haemochromatosis.

Some patients prefer more privacy than others and that is entirely understandable. You should not feel under any pressure or obligation to talk to anyone about the condition if you do not want to.

  • Tell family members, especially those who may have a risk of also carrying the genetic mutation that causes haemochromatosis, and encourage them to request testing if you can
  • Talk to work colleagues and friends, partly so that they will understand when you are dealing with your symptoms or off work seeing consultants or being treated, and partly so that they are aware themselves if they or their families experience symptoms
  • Consider wearing our wristband or using other items from the charity to prompt conversation
  • Consider taking part in fundraising events, which not only help the charity financially but also raise general awareness of our work and of haemochromatosis
  • Take part in any campaigns or lobbying that we organise; the more people that do so, the stronger our voice will be

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