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.
If it's not me accusing my wife of moving something only to find out I misplaced it myself (recently it took me 3 days to find my new flashlight in the freezer, right by the icecream sandwitches), it's me accusing her of watching the same episode of the Walking Dead over and over. She's gone to church with the kids and I'm sitting here all alone.
I'm getting to the point where I might just see a brain doctor. I don't know what else to do. Sometimes I'm alright. Other times I just drop the ball for days on end. It affects me at work too.
Does anyone have a library of HH and the brain documents or links they wouldn't mind sharing?
Also, would anyone of you know who I can go see? My circumstances are a tad different than many. I was diagnosed at 29 with a ferritin of 3,166. I think my brain was highly affected.
I'm just being blunt. I need to prove to these doctors that there is a reason to go forward. Before I see a specialist I want to have my i's dotted and t's crossed.
Also, any advice is well appreciated. I feel like I'm going to be 40 years old and in a nursing home. Sorry for acting so pathetic. It's just been a really rough go the past couple of weeks. I need tangible evidense to show my wife and doctors. thnx
I'm getting to the point where I might just see a brain doctor. I don't know what else to do. Sometimes I'm alright. Other times I just drop the ball for days on end. It affects me at work too.
Does anyone have a library of HH and the brain documents or links they wouldn't mind sharing?
Also, would anyone of you know who I can go see? My circumstances are a tad different than many. I was diagnosed at 29 with a ferritin of 3,166. I think my brain was highly affected.
I'm just being blunt. I need to prove to these doctors that there is a reason to go forward. Before I see a specialist I want to have my i's dotted and t's crossed.
Also, any advice is well appreciated. I feel like I'm going to be 40 years old and in a nursing home. Sorry for acting so pathetic. It's just been a really rough go the past couple of weeks. I need tangible evidense to show my wife and doctors. thnx
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3518077/
I know this is a long article but very thorough linking the cardio vascular issues with cognitive decline. You could do well to take a read and sorry it's along one but it really does cover all the bases.
Sorry to hear of your troubles, Strype. Makes things very frustrating having the issues, getting answers, getting support and finding adequate health care and drs that "get it". I have Alzhiemer's in my family, and now know there is HHC involved, as well as my husband's mother who is a carrier of C282Y has had high bp and cognitive decline for many years. Now scans are showing the signs of dementia...genetics play a huge role here, even with out age, or high iron levels. It what our body decides to do with the iron and how we metabolize it. I believe it is this article above that mentions that the thoughts were that the iron went first to liver then heart, and somehow the brain was protected by the BBB...blood/brain barrier. But that notion has stuck even though the evidence is to the contrary...it is known that the liver then the BRAIN is affected first and second most of all...neurological disorders arising from iron accumulation on the brain is the subject of the most recent studies and focus of scientific research. The H63D connection to Alzheimer's is very relevant and current. Not sure what your genes are, but also having cardio issues you'll see how the cognitive decline is closely linked to heart damage, and insulin resistance, metabolic syndrome, diabetes...
Hope this helps a little and glad you also found the other articles I had posted several weeks ago. You had been mentioning this stuff before so I had passed them along back then...
Take care, C