Posted by: Leslie Sigal Javorek • Date: Sat. July 03, 2010 5:05 am
Still trying to catch up to where I left off before my trip. Too much to do but my body and mind just refuse to cooperate for more than a half-hour at a time. I am truly thankful for the fact that I don’t suffer from the huge mood-swings or periods of sudden rage that often accompanies Hereditary Hemochromatosis, at the same time though, I’m really frustrated by the increasing inability to focus both my mind – and my eyes. It’s like I’ve suddenly developed ADHD at the age of 56 and someone keeps moving my monitor closer than farther away then closer then… Well, you get the idea. HFE is such an odd disease in that it can have so many manifestations and it seems that no two people have the exact same combination of symptoms and the mix changes constantly.
I’ve got great doctors – but none of them have HFE so they can’t really relate to what I’m going through, and I’ve been searching for other who have HFE to compare notes with. Through those searches, I came across a reference to the book “The Bronze Killer” by Marie Warder and on Amazon.com there were a ton of reviews of the book that were all just raving about how it’s considered the BEST book on the subject of HFE and more specifically, on the experience of the author’s husband and both children having it and how it’s affected all of them. Marie’s husband is like me in that he was not diagnosed until after he had already suffered permanent damage to his liver while her children were fortunately diagnosed before the disease had advanced that far. I ordered the book on Tuesday and received it Thursday. I used to read at least 1 book a day but those days are long gone and so I’m only on page 11. I’ll fill you in as I get farther along.
UPDATED INFO:
The importance of sharing medical records and information with your immediate family members must not be taken lightly or ignored. People rarely feel any significant symptoms of Hereditary Hemochromatosis (HFE) until it’s too late to avoid permanent, life-threatening harm. But unlike an unexpected car crash, broken spine, or burst appendix, the majority of cases of HFE CAN be predicted, tested for, and even prevented IF there is a known family history of a combination of certain risk factors (even where there’s no family history of HFE having been diagnosed). If a patient is found to have any of the genetic defects that can lead to Hereditary Hemochromatosis, from one or both of their parents, and before they have suffered any permanent damage to their organs, there are easy steps to take that can prevent most or possibly all of the debilitating and dangerous effects of the full blown disease and allow that patient to live a “normal” life and have a “normal” life-span.
Most people think that because they personally were never diagnosed with HFE then there is nothing in their medical records that could possible be of help to their family. WRONG! That’s because, despite being the most common of all genetic diseases, HFE is very rarely diagnosed. Before 1996 there wasn’t even a test that could positively identify it! But our medical records contain much more than a list of diagnosis and treatments. Doctors keep notes of symptoms you complain of, what they have tested you for, the raw results of those tests (meaning just the numbers without interpretation), and what the doctor suspected as well as ruled out as the cause of your symptoms. These are the most critical parts of your records because it is not a single number that is too high or too low that would indicate you MIGHT have Hereditary Hemochromatosis – rather it is the combination of which numbers are low, which are high, and which are “normal” – and how consistent those numbers remain or whether they steadily increase or decrease over the years and in combination with what other symptoms and diseases or conditions. So the judgment of which records are needed cannot be made by someone with either a conflict of interest and/or a lack of the specific medical training to understand the interplay of such information.
Yes, we each do have the right of privacy when it comes to our health records – but PLEASE consider the fate of your family: siblings, children, parents, grandchildren, and 1st cousins. Carefully weigh what is really more important: that none of your family ever find out you once had Herpes or an abortion or whatever else may be embarassing or even shameful – OR – that you can actually help save your loved ones lives or atleast allow them to have a better quality of life for a longer time simply by sharing your un-edited medical history?
A good way to start the dialog with your family members on the importance of being open and sharing, the Surgeon General of the United States has launched a public health campaign and has provided tools to help you create a Family Health Portrait. Access the My Family Health Portrait Web tool at https://familyhistory.hhs.gov/.
Now, back to the original blog post:
Completely off-subject but appropos for this weekend when those of us who are blessed to be Citizens of The United States celebrate our Independence Day on the 4th of July, I’ve created a few patriotic icons as well as a Desktop Picture (in 3 different screen sizes) for you. Enjoy!
Free Clip-Art / Icons & Wallpaper of the Day
The following images are either full or reduced size previews. Simply right-click (or control-click) on the preview to save the image(s) of your choice to your desktop. (Unless otherwise noted, downloads are 512px X 512px in .png format). As always, usage of any of the images offered on this blog are free for your personal use while subject to the limitations of my Creative Commons Non-Commercial – Attribution – No Derivatives 3.0 license. (See sidebar for details)
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IconDoIt 