Hi,
I am trying to get people to help me create awareness of this disease as I have been left with the most awful pain even after blood letting. My symptoms have not disappeared and I am fed up with the doctors who just assume that now I have a diagnosis that everything is OK, but it's not, and I wondered if anyone has the same arthritic style pain as I do.
I am sorry no one has responded for so long. My 9 year too late diagnosis and subsequent bad health has motivated me to try to prevent others from having the same problems.
I started a Haemochromatosis support group, advertised in free newpaper, community bulletin boards on tv, radio, distributed many flyers and now get lots of calls for help. I am able to direct people to conscious doctors who also treat haemo correctly, give people the right questions to ask to get the right answers and so on.
The best we can do is educate the patients so they can educate their doctors.
Good luck in your endeavours.
This kind of disease sound new for me I always heard of iron dificency !
Yes, joint pain in wrists...knuckles sticking and jumping out of place..maddening!!! Hope you'll come back to the forum to find you're not alone.