What is Hemochromotosis?
Hemochromotosis is a blood disease wherein the liver cannot rid the body of excess iron. Said iron then deposits in the major organs, tissues and joints, and if the iron is not removed, it will build up and the organs will become diseased. Untreated, the disease is fatal.
Hemochromotosis is found mostly in people of Northern European descent, but can also be found in others of various ethnic groups.
I will leave the medical information to the professionals. For more information on the medical explanation of Hemochromotosis, go here:
I'm Debra Shiveley Welch. I am not a physician, medical researcher or nutritionist. I am an author, and I have Hemochromotosis.
In this blog, I will try to share all that I have learned about this disease, and how I have managed to control it. Hopefully, all of you will join in, especially when I begin to discuss diet and offer tips on food companioning, and share recipes that my son and I have developed.
I first began to realize that something was amiss in 2010. I didn't have the energy that I had enjoyed all of my life, and things just weren't - well, they weren't right. It's hard to put into words, but I think you understand what I'm saying. Most of us know when our body isn't feeling the way it should, and if we listen to the subtle signs our body is sending, we can hopefully avoid the more critical ones in the future.
I made an appointment with my doctor, but an examination and blood tests didn't reveal anything amiss. Still, my energy level was dropping. I went to powwow that year, the same as I do every year, and found that standing during ceremonies, and even dancing, was beyond my limit.
In March of 2011, I saw a rheumatologist to see if he could figure out what was happening. He also ran some tests, and except for the expected diagnosis of arthritis, nothing was found. Then I found 23andMe.com. No, this is not an advertisement for them. I went to them for a completely different reason, and six weeks later, a piece was added to the puzzle.
I decided to have my DNA analyzed because of my deteriorating health, but I had an alternative reason as well. My son is adopted and did not posses any medical history information. As ours was a closed door adoption (both parties' identities' hidden), I believed that I should have Chris' permission to "knock on the door." He didn't wish to, so I bought a kit for him as well. Now, this may seem as an aside, but it actually ties in to what I have to say.
When you receive your results back from 23andMe, you first receive information regarding your genetic heritage and a list of people you are related to. As it turned out, my adopted son is also my fourth cousin. You can imagine the thrill I experienced on finding this out; it answered a lot of questions. Questions like, why does he think so much like me? Why does he walk like my grandfather (whom he never met)? Why does he look so much like me? Well, there was my answer. A bit of my elation dissipated, however, when the medical results came back. My chart showed I have one gene for Hemochromotosis. Chris' chart said the same.
Backing up a little here, the reason I adopted was so that I would not share my genetic pool with my child. I guess this point was now moot. His chart showed that he shared every genetic marker as mine. However, I was pleased that at least he found out at a very young age, being then 19, whereas I was 58 - a late diagnosis for a woman. (Late diagnosis for men is around 40.)
I asked my Rheumatologist to test me for the gene. When that test came back, it verified the findings of 23andMe. I had one gene for the disease. One gene: my Rheumatologist told me not to worry, people with one gene rarely become symptomatic. He was wrong, and in my case, almost dead wrong. However, knowing how my body works, I decided to go to my primary care giver and ask for help. I had begun to research Hemochromotosis, and asked her to check my ferritin levels. (Ferritin is a protein which measures the iron storage in the body.) The test came back with ferritin levels of 111.
This was a little high. Ferritin levels up to 300 are safe for a man, although teetering on the caution side; the level is 200 for a woman. My primary decided to order monthly tests. The levels grew. Soon I was written a script for phlebotomies, but we'll get to that later. The main issue is that, for me, this treatment didn't work.
October of 2012, I was rushed to the emergency room where I was diagnosed with Chronic Liver Failure, cirrhosis, kidney failure and my pancreas was affected. The doctors told me and my husband that I had the blood workup of a corpse - and to make arrangements. Somehow I recovered, but returned to the hospital January 2013. Again I survived against all odds, returned home, and began my research.
Treatment
The standard treatment for Hemochromotosis is bimonthly to monthly phlebotomies. I began treatment as soon as I was able, but would vomit and then faint. It was determined that I have low blood volume, and even one-half pint blood letting would send me into a dead faint. This isn't true for everyone, and if you can tolerate bi-monthly or monthly blood letting, a phlebotomy is a doctor's preferred treatment.
For those of you like me, there is another option, but it includes discipline and preferably routine blood tests. I will tell you in the next post how I got my ferritin level down from over 400 to 51 (very safe) in two months.
Please feel free to comment. In fact, I would appreciate it. As we get into diet, I would love it if you would send your recipes (credit will be given), as we delve into how to control Hemochromotosis by diet and supplements.
In the meantime, I highly recommend Holistic Health for Hemochromotosis by Dr. Eric Lewis, ND. I found this book about a month ago and it has helped give me further confidence in treating my disease. It has become my bible.
Finally, you will probably find that you have to educate your doctor on this disease. I have bought a paperback copy of this book for my doctor, and I recommend that you do the same.
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