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.
I had a minor surgery to remove a cyst from my lower lip today, and my anesthesiologist asked if i had any thing wrong with my blood and I told her that I have Hemochromatosis. She looked at me like i was speaking in tongues! I explained what HHC was and she asked how you treat it and i explained the whole thing! the RN that was in the room said her uncle has it so she knows all about it and helped me out with the bigger terms
What shocked me was that when she asked how it affected me most i told her that every single one of my joints ache and i have pretty bad fatigue. She then said that she thinks her 14 year old daughter has it. I asked if her joints hurt and she said that she never complains of joint aches, but she is tired quiet a bit. She asked how it was tested and when i told her she said that she wanted to get her daughter tested. I tried to tell her that just because she has fatigue doesn't mean that she has HHC!! i suggested she get tested for anemia instead, as that's a much more likely diagnosis.
So either i helped her figure out what's wrong with her daughter, or confused the heck out of her!
What shocked me was that when she asked how it affected me most i told her that every single one of my joints ache and i have pretty bad fatigue. She then said that she thinks her 14 year old daughter has it. I asked if her joints hurt and she said that she never complains of joint aches, but she is tired quiet a bit. She asked how it was tested and when i told her she said that she wanted to get her daughter tested. I tried to tell her that just because she has fatigue doesn't mean that she has HHC!! i suggested she get tested for anemia instead, as that's a much more likely diagnosis.
So either i helped her figure out what's wrong with her daughter, or confused the heck out of her!
Wonder if the Mom knows how much sleep her daughter is getting? The daughter should be sleeping 9-10 hrs p/night but I bet she isn't. Wonder if the daughter is into sports, dance, marching band, etc... With her being your nurse, maybe she has already ruled out those things as the cause of her being tired:) Either way, maybe she'll get the daughter checked out & HOPEFULLY it isn't HH!