Hi my name is Jeff I have hemochromatosis yea I would be happy to tell youll my story message me ill answer any question

Okay, thank you! :)

Brinski here. Happy to tell about Hemochromatosis. The more that know about this silent killer the better. Yes it can kill you.... Did you know that....?????

I did read about that... :/

We were told to ask the following:
1. When were you diagnosed?
2. What treatments have you gone through?
3. Briefly describe those treatments.
4. Did those treatments work and if yes, what is your condition now?

It's okay if you're uncomfortable and don't answer^^

Happy to spread the word as this is an unknown killer. My disease was camouflaged by being on HRT. It made my symptoms go away. I was diagnosed at the age of 60. I am a female. Women usually don't find out about this until they stop menstruating. BUT I have read a few stories about younger women, who are having Liver failure. I must say that Alcohol will play a part of this as well if you have both. I don't drink. When diagnosed my levels were 2003. Should have been between 50/200. I got a rash which they thought was a blood disorder. Still don't know what the rash was about. Lots of tests, Iron and Genetic test produced the diagnosis of Hemochromatosis. Both my parents must have had the carrier gene or one of them had the full disease C282Y. Since then I have had 18 months of blood being taken from my body. Every 2 weeks 500mls taken. This is the only way to bring your iron levels down. It is called Venesection in Australia. I have had 18 litres of blood taken to get my Iron levels to normal range. It is like giving blood. Only they throw mine away. I now have my Iron levels in normal range. Ferritin, Transferrin and Iron. Now I am on maintenance for the rest of my life. This means I have an iron test every 3 months to see if I need to have my blood taken. If my levels are creeping up I have a venesection. It is not as simple as just having your blood taken. Your joints are extremely painful. Some days I could barely walk for the pain. It makes you extremely tired. Fatigue. It gives you Arthritis, Psoriasis. Heart Eurythmia. Lots of things. Have you looked up Hemochromatosis.org.au? People have died from this without knowing. Earnest Hemingway is said to have had this disease, it killed him.
Did you know it came from the Vikings? Another interesting piece of information.
So even though my levels are now in normal range, the symptoms continue. Maybe not as bad as they were, but still persist. Hope this helps you. July is Hemochromatosis month in Australia.

Yes, that link was one of my sources^^ I can't even imagine the problems that you had to power through to get to today. Anyone affected by this and is still fighting is very inspiring.

My partner and I submitted our case study today. Thank you so much to everyone who replied :)) your stories will not go unheard.

Hope you did well with your assignment and everyone took notice of this disease.

I hope it gets more attention too :)