Undiagnosed and rare conditions
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Has anyone got hemochromatosis?

lillypad123lillypad123 Member Posts: 1 Listener
Has anyone got hemochromatosis


  • Chloe_ScopeChloe_Scope Administrator Posts: 8,360 Scope community team
    Hi @lillypad123 and thank you for reaching out to the community. I hope you are able to find someone with the same experiences. Please feel free to have a look around the community and get involved with whatever you want :)
    You may find the rare conditions board useful. If you need anything else then please do not hesitate to ask :)
    Community Partner
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    @lillypad123, I not personally have it but I know 2 people who have.

    Its very debilitating and I can sympathise with you.

    My friend has just been tested, his father has it, but thankfully he got the all clear.

    Hope your ok
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @lillypad123, and welcome!

    I've had a look around and it appears that you're the first person to discuss hemochromatosis on the community! Would you like to tell us some more about it?
  • MrsBoo1980MrsBoo1980 Member Posts: 3 Listener
    I do! Diagnosed this year, thought it was an effect of blood transfusions but turns out I'm genetic x
  • GeoffBosworth195661GeoffBosworth195661 Member Posts: 163 Pioneering
    edited July 2018
    Hi @lilypad123 and welcome, OK This is an overload of iron in the body which can be very dangerous if you are not sure what levels you are on. Hemochromatosis you have to get this checked out and to find what can be done to make things much more comfortable. Several types are in the types of the gene you will need to know which one so it can be treated
  • CazannCazann Member Posts: 88 Pioneering
    Hi Lillypad, I have just read an article about Hemochromatosis. It is in the Daily Mail (Tuesday 22nd Jan 2019) It is in the Good Health section. I hope that you can get something from this. Goog luck.

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