I apologize for not being "involved" as I should be on this website.  It has been some time since I have commented on anything.  I read everything that is sent, though.

I will make the effort to stay linked up and active.

 

Once again, I apologize.

 

rowblay 

 

I know that I should not have put this on hold for as long as I have (10 months), but I am returning to National Institute of Health in Maryland for treatment.  I stopped intially because of amishap, then I was laid off and couln't afford to make the trip.  I can now and I need to. 

 

I noticed over the last few weeks that I have been feeling the same way before I was dx'd with HHC.  I have lost weight over the course of the year and my new job has me constantly moving, not sitting like my last job.

I have been getting those sharp pains in the upper right abdomen and the joint pains have returned with a fury!  Tall tale signs--it's time to go back.

 

I will go in Sept. for my usual Double Red Cell Aspheresis.  I will fill in the #'s as they are given to me.

 

rowblay 

 

If you have done any research on Hemochromatosis, you find that not many Docs are not even aware of HHC.  I was frustrated because when I found out about what I had, I was kinda left to do my own connections.  There are no suuport groups in my area that specifically deal with HHC.  You can find a million support groups for Diabetes, Cancer, and Liver Disease (which can all be brought on by HHC).  I have yet to meet someone with HHC.  I have met a few doctors that treat HHC.  Locally I have to be treated at a cancer institute.  Who wants to do that.  I chose to go to NIH. 

 

Sure, you can go to the blood bank and LIE, but you may not get the lab information you are looking for. 

Cuurently there is a test that the American Red Cross is involved in.  They are in the process of accepting blood from HHC patients and possibly using it intheir organization.  You can call your regional office and ask questions to see if the test is complete and what are their findings.

I hope others are having a better experience with the discovery and research of HHC.

I was diagnosed in 2003.  I have had a Bx and confirmation from the Mayo Clinic that there is accumilation of Iron in the Liver.  I never heard of HHC untill my P.C.P. had an idea to furtur test me because of high AST/ALT readings.  My father hasn't shown any evidence of  related illness.  My mother has Fibromyalgia and a niece has Hashimoto's.  Diabetes runs in my mother's side (boy! does it ever).  I have leared alot about the genetics and treatment of HHC.  National Institute of Health as an excellent treatment that takes out 2x the amount of red blood cells as opposed to a phelbotomy.  This process is called Aspheresis.  I have learned to deal with this and to realize the symptoms when they arise which means I may need to have another blood withdrawl.