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.

corsair9 | @corsair9 | Jun 11, 2023

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

Colleen Young, Connect Director | @colleenyoung | Jun 11, 2023

In reply to @corsair9 "I tried to list some links but I am not allowed. Check Wikipedia for general info,..." + (show)

@corsair9, I noticed that you wished to post URLs to articles with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post are not spam. Please allow me to post it for you.

- Hereditary Hemochromatosis: Rapid Evidence Review https://www.aafp.org/pubs/afp/issues/2021/0900/p263.html
- Hemochromatosis type 4 https://rarediseases.info.nih.gov/diseases/10094/hemochromatosis-type-4

corsair9 | @corsair9 | Jun 12, 2023

In reply to @colleenyoung "@corsair9, I noticed that you wished to post URLs to articles with your post. You will..." + (show)

Thank you, Ms Young. I understand the policy and accept it, but you are very kind to provide info that could be very helpful to the poster - who seemed to feel isolated and alone. Have a blessed day. IR

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