Monday, May 07, 2007

Hemochromatosis is the most common form of iron overload disease. Primary hemochromatosis, also called hereditary hemochromatosis

I have primary hemochromatosis.

So, dennis, now that we know what you have, what does it do?

Hemochromatosis causes the body to absorb and store too much iron. Iron is an essential nutrient found in many foods. The greatest amount is found in red meat and iron-fortified breads and cereals. Healthy people usually absorb about 10 percent of the iron contained in the food they eat, which meets normal dietary requirements. People with hemochromatosis absorb up to 30 percent of iron. Over time, they absorb and retain between five to 20 times more iron than the body needs. Because the body has no natural way to rid itself of the excess iron, without treatment, the disease can cause the liver, heart, and pancreas to fail because iron is stored in body tissues, specifically the liver, heart, and pancreas.

Because this disease takes so long to kill someone (and left untreated you could live 30-50 years. Lucky fella!!) the list of symptoms includes a grab-bag of everything:

- Joint Pain
- Fatigue---------check! This is my major complaint. I have been known to fall asleep when put on hold while using the telephone. At one time I found it difficult to walk 5-10 minutes at a time in the middle of the day and still stay awake. I know it is time for treatment when my energy levels start to drop. Much like the past 2-3 days.
- lack of energy ---check! See fatigue
- abdominal pain
- loss of sex drive --- I would like to state here and now that I am as horny as I was at age 18!!
- heart problems
- memory loss/lack of focus --- check! I have sometimes finished a phone conversation with family members and called them back (minutes/hours) later to 'initiate' this very same conversation.

Complications that can arise if left untreated:
- arthritis
- liver disease, including an enlarged liver, cirrhosis, cancer, and liver failure
- damage to the pancreas, possibly causing diabetes
- heart abnormalities, such as irregular heart rhythms or congestive heart failure
- impotence
- early menopause
- abnormal pigmentation of the skin, making it look gray or bronze
- thyroid deficiency
- damage to the adrenal glands


There are two MAJOR blessings that come with this disease
1) It practically takes a lifetime to kill you
2) Treatments. Treatments are easy, once diagnosed. Regular phlebotomies (sp?) will reduce iron in the body and improve chances for a healthier, happier, longer life.

So how does one contract this disease? Happily it is not contagious. Nope, you can swap spit and various other bodily fluids with anyone suffering from this disease and fear nothing.
This disease is genetic. And it is everywhere:

Hereditary hemochromatosis is one of the most common genetic disorders in the United States. It most often affects Caucasians of Northern European descent, although other ethnic groups are also affected. About five people out of 1,000—0.5 percent—of the U.S. Caucasian population carry two copies of the hemochromatosis gene and are susceptible to developing the disease. One out of every 8 to 12 people is a carrier of one abnormal gene.

9 comments:

Diana said...

wow, so you're going to get early menopause?
Joking. Like you didn't know.Glad it will be a lifetime before ya croak.

creative-type dad said...

I guess on the list of diseases, this one isn't that bad.

I'm hoping just for "crazy" so I can yell at teenagers hanging out in the mall.

Izzy said...

I remember reading about that disease when i was pregnant. I have the opposite, being chronically anemic.

Maria said...

You know, I was just thinking this morning in the shower that everyone has something. I have meniere's syndrome, type 1 diabetes, rheumatoid arthritis and chronic anemia. Nothing that will kill me as long as I treat myself, but enough to just make me majorly cranky some days.

How did you find out you had this? Does it play much of a role in your everyday life?

I have this theory that every single blogger has something. I have never met anyone who is just plain healthy, nothing. I mean, like Roseanne Rosannadanna said, "It's always something."

Hannah said...

Wow. I've never heard of it although I suppose it does make sense - if some people can be anemic then it only stands to reason that it could go the other way.

Are either of the child.imps affected?

dennis said...

diana: funny! :)

tony: Give us a call sometime. We would be more than willing to leave the playground to heckle imps in the malls!!

izzy: I'd offer to let you have some of my blood but wife.imp is first in line to draw my blood

maria: I was diagnosed about 10 years ago. before that I had to visit 3-4 doctors who absolutely refused to believe that someone under 30 had it. It actually is a major part of my life as it affects the foods I can eat, and I will never get away from having my blood drained periodically and when it gets closer to the time that is necessary, my symptoms become more pronouced

hannah: this is actually more a 'white man's' disease. While other races can be affected, the numbers are vastly less then those whose ancestors came from western europe. So, the hope is that wife.imp's family did not have this genetic mutation and that my imps will not have to worry. Depending on who they marry, we might have to revisit this issue with the grand.imps

The Patient Connection said...

Hemochromatosis and Phlebotomy – A New Research Blog

Firstly can we thank you for all your help so far in The Patient Connection’s research into Hemochromatosis.

We would like to take this opportunity to invite you to a follow up ResBlog on Hemochromatosis. For this second round we are concentrating on the area of phlebotomy.

We are particularly interested in your attitude to phlebotomies and how you might like the process to be improved.

To take part please click this link

http://www.thepatientconnections.com/blog.asp?uid=44


The blog is anonymous and easy to use. Instructions are given on the blog so thanks in advance for your help it is much appreciated.


Best wishes

Belinda
The Patient Connection
Belinda.shale@thepatientconnections.com

PS Please email me if you have any queries about the blog or any of our projects.

The Patient Connection said...

Hemochromatosis and Phlebotomy – Updated Blog

Hi

Thanks for all your help so far with our Hemochromatosis blog. The discussion has changed in the last few days so we would like to take this opportunity to invite you again to a research blog on Hemochromatosis. We are very interested in you attitude toward Phlebotomy and have therefore added a few new questions.


To take part please click this link

http://www.thepatientconnections.com/blog.asp?uid=44



The blog is anonymous and easy to use. Instructions are given on the blog so thanks in advance for your help it is much appreciated.


Best wishes

Belinda
The Patient Connection
Belinda.shale@thepatientconnections.com

Mike said...

Allyn,

Thank you for the call regarding case stories for Discovery Health's "Mystery E.R." I have attached a one-sheet synopsis of the show. This season, we are looking for compelling medical mystery stories that relate to the following (but not limited to):

-Occupational and Non-occupational Environmental poisonings/toxicity (Undiagnosed mercury, lead, shellfish, toxic mold, radon, etc...)

-Criminal toxicity/poisonings

-Anything that went on undiagnosed or overlooked that may have presented to be something other than it was until a clue found by either a home or office visit led professionals to discover the real cause and correct diagnosis.

- All of our stories are intended to inform, educate, and raise awareness. The person(s) affected must have made an ER visit at some point during their plight.

Please feel free to give me a call anytime if you have further questions and I look forward to speaking with you soon. Thanks again.

Sincerely,

Michael Webster
Mystery E.R.
Discovery Health
Mike Mathis productions
87 N. Raymond Street
Pasadena, CA 91103
Phone: 626-535-0868 x. 287
Email: mwebster@mikemathisprods.com