Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
Hi everyone,
I'm Jenny from the UK. I'm currently being tested for hemochromatosis and possible Wilson's Disease. I'm very keen to get a better understanding about the disorders/diseases from fellow sufferers so I've just started a journal entry and would really appreciate it if you would like to share your stories there. Any thoughts about my situation would also be much appreciated :-). I've included my test results, symptoms and medical process. The information may also be of interest to others just starting out on this crazy journey - we can support eachother! We all have very different stories to tell, and it seems very different experiences with our medical treatments. I'm especially sorry to read about how many people have suffered and had to wait so long for a diagnosis and treatment. It's hard enough as it is, without being messed about by so called "professionals" You can view my journal by visiting my profile :-)
Look forward to meeting you!
I'm Jenny from the UK. I'm currently being tested for hemochromatosis and possible Wilson's Disease. I'm very keen to get a better understanding about the disorders/diseases from fellow sufferers so I've just started a journal entry and would really appreciate it if you would like to share your stories there. Any thoughts about my situation would also be much appreciated :-). I've included my test results, symptoms and medical process. The information may also be of interest to others just starting out on this crazy journey - we can support eachother! We all have very different stories to tell, and it seems very different experiences with our medical treatments. I'm especially sorry to read about how many people have suffered and had to wait so long for a diagnosis and treatment. It's hard enough as it is, without being messed about by so called "professionals" You can view my journal by visiting my profile :-)
Look forward to meeting you!
Just got back from the hospital after my 3rd venesection, and they had my recent test results, my ferritin level has now fallen to 480.4!!!! it started at 675 so that is a great result, and that is after only 2 venesections.
No wonder that I am starting to feel a bit better in myself, my hip that used to be like toothache, I can now barely feel any pain in. The brain fog also seems to be lifting and my mood is a lot brighter. I still feel tired but I don't think its quite as bad, walking is still an issue its like wading through water. But it is early days yet so hopefully this will get better as well.
Don't let the "professionals " fob you off push for treatment.
Take care
Steve
Yes, I read your latest update on your post earlier - that's such good news! The treatment has worked so quickly for you and it leaves me feeling rather optimistic. I know it's different for everyone, but even so! I'm prepared to fight for treatment if necessary!