Does anyone else have ferroportin disease, AKA hemochromatosis Type 4?

Posted by mayo99824 @mayo99824, Jun 10, 2023

Ferroportin disease is considered rare, but I think it may be more common than that. When you have hemochromatosis symptoms ( high ferritin, liver disease, heart arrhythmia, joint pain, fatigue, thyroid disease, etc) they usually check for the 3 genes that hit 95% of people with hemochromatosis. Hemochromatosis 4 is on a gene that they usually don’t test. Mine is SLC40A1. Nebula Genomics picked it up for me. Are there others out there? I feel I am alone. I worry because the only conditions of H4 that I don’t have yet are diabetes and dementia - and I want to do all I can to stave them off.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

I tried to list some links but I am not allowed. Check Wikipedia for general info, although you seem to be well informed.

Do a search for support groups. NIH rare diseases lists some.
God bless! IR

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