Showing posts from 2014

Menopause + Hemochromatosis = Hemopause (and women of a certain age are at risk)

Are you dealing with menopause, or the approach of menopause? Then this blog post is for you. Some women approaching menopause are at risk of absorbing too much iron, resulting in serious joint pain and damage to the liver, pancreas, heart, brain, and other soft tissue. Why? Before menopause, the menstrual cycle gives women a natural defense against excess iron buildup; that monthly loss of blood removes iron from the body. However, this can mask a surprisingly common genetic disease called hemochromatosis in which the body's normal handling of iron is disrupted, leading to a potentially fatal condition called iron overload (it's what killed Hemingway and it's what Tamra Barney's son Ryan has on Real Housewives of Orange County ). This blog post explains the problem and how to defend yourself and the women you love. What is Hemopause? Without that natural monthly loss of blood, undiagnosed hemochromatosis can start causing damage that is hard to detect before it becom

Hacking hemochromatosis: how to get your HFE gene status via 23andMe (C282Y, H63D, and S65C)

UPDATE! August, 2017: The 23andMe service has resumed provision of HFE status as part of its normal service, which makes the following "hack" unnecessary. For more details, see this 23andMe article .)  If you already know about hereditary hemochromatosis and you want to find your genetic HFE status, you can skip to section 2 for the link to download our document that shows how to use raw 23andMe DNA data to check your HFE for C282Y, H36D, and S65C. If you are new to hemochromatosis, start with section 1. 1. About hereditary hemochromatosis Sometimes referred to as HHC or simply HH, hereditary hemochromatosis is a genetic condition in which your body accumulates iron in joints and organs (also called genetic haemochromatosis in some countries and nicknamed bronze diabetes and Celtic Curse). If untreated, HH can lead to iron overload which causes cirrhosis of the liver, diabetes, heart disease, endocrine problems, depression, impotence, and joint pain and eventual replacement.

Introducing Hemo-Doc-Stars: doctors who 'get' hemochromatosis

To mark Hemochromatosis Awareness Month  this July, 2014, we asked visitors to the Fighting Hemochromatosis page on Facebook to let us know if they had encountered a GOOD hemochromatosis doctor. Why? Doctors who 'get' hemochromatosis are hard to find, even though hereditary hemochromatosis is the most common genetic killer in America today. We were pleasantly surprised to get scores of responses, some with rave reviews from patients. So, thanks to those patients who took the time to share their experience, we can now present the first edition of the “good hemochromatosis doctor” list, dubbed Hemo-Doc-Stars . Click here to  download the Hemo-Doc-Stars list in PDF format . What’s the thinking behind this list? Many people who encounter hemochromatosis complain about poor treatment by doctors and clinics. This ranges from ignorance to rudeness to outright malpractice. In fact, a study by America’s Centers for Disease Control and Prevention found that, on average, it took a stagg

Death by Ignorance: Millions of Americans at risk from hemochromatosis, but few doctors know much about it

Hemochromatosis is the biggest genetic killer in North America. Did you know that? Do you know what hereditary hemochromatosis is? Sadly, ignorance of hereditary hemochromatosis, often referred to as HH, is rampant among doctors as well as mere mortals like you and me, leading to countless thousands of preventable deaths every year. Most of those deaths don't come with "hemochromatosis" on the death certificate, but HH is the culprit in many cases of death from liver cancer, heart failure, lung disease, diabetes, and suicide. Just how ignorant are we of this deadly genetic disorder? Here's a quick test: Have you ever heard of one or more of the following genetic conditions: Cystic fibrosis • Down syndrome Sickle cell disease • Haemophilia I'm betting you have heard of them, but guess what? They are all rarer than hereditary hemochromatosis! If you don't believe me you might be tempted to Google "most common genetic disorders" but guess what? Hemo

Let's fight hemochromatosis, the most common genetic killer in the western hemisphere

Hereditary hemochromatosis is the most common genetic killer in the western hemisphere. Because hemochromatosis is particularly prevalent in people of Celtic origin, it is sometimes called Celtic Curse. Because hemochromatosis can cause your skin to take on an orange color and is a leading cause of type 2 diabetes, it is sometimes called bronze diabetes (hemochromatosis may be spelled h ae mochromatosis in some countries and called HH or HHC).  You don't have to be Irish to be a victim of this widely under-diagnosed condition in which iron reaches toxic levels in your body and causes crippling disabilities such as: liver cancer, diabetes, congestive heart failure, macular degeneration, and osteoporosis not to mention chronic joint pain, arrhythmia, hair loss, fatigue, infertility, impotence, and depression. With greater awareness and compassion we can defeat hereditary hemochromatosis. Although simple tests for hemochromatosis are available, too few doctors know when

New St Patrick's Day Tradition: Save lives! (with blood tests for iron overload, due to Celtic Curse)

Photo by Michal Osmenda Here is a modest proposal to save lives on St. Patrick's Day, and for years to come:  GET YOUR IRON LEVELS CHECKED! Why? Because too much iron in your body can cause serious damage to joints, liver, heart, brain, and endocrine system. And the leading cause of this "iron overload" is hereditary hemochromatosis, a genetic condition so closely linked to Ireland it is often referred to as Celtic Curse . The classic form of genetic haemochromatosis , which is the Irish-English spelling, is present in 1 out of every 83 people in Ireland and around 1 in every 200 white people of Northern European descent around the world. Note that it can also be present in people who don't self-identify as white. (See  WebMD for more on ferritin tests  and NEJM for prevalence .) If you are Irish, part-Irish, or "Celtic" in the broadest sense of the word, then you should know your ferritin level. Why? Because, if hemochromatosis is discovered early enough yo

10 things to know about ports, the ones for blood not ships

The following 10 points about "ports" that are installed in patients who need to endure a lot of blood drawing come from my wife, Chey Cobb, who was diagnosed with hereditary hemochromatosis or HH in 2008. As you may have read elsewhere on this site, HH can result in your body having too much iron. This can be measured by checking your ferritin level. Ferritin is "a ubiquitous intracellular protein that stores iron and releases it in a controlled fashion". ( Wikipedia ) The standard treatment for people with excess iron, as indicated by higher than desirable ferritin numbers, is to draw blood. When you give blood it removes iron from your system, and that is one reason the Red Cross does not allow you to give "whole blood" more than every 56 days. But people who suffer from iron overload may need to be bled many times per month for a period of months in order to reduce excess iron (as determined by repeated ferritin tests). The point is, frequent blood dra