September is National Menopause Awareness Month and what better way to mark the occasion than getting your genes checked for hereditary hemochromatosis. Why? Because menopause ends the monthly blood loss that can mask the most common deadly genetic condition in America: hereditary hemochromatosis (also called iron overload, Celtic Curse, bronze diabetes, or HH and HHC for short).
If you were born with hemochromatosis, sometimes described as a defect of the HFE gene, menopause can cause your body to start accumulating toxic levels of iron, resulting in chronic fatigue, serious joint pain, liver damage, diabetes, depression, loss of libido, migraines, and worse.
Why should I get my genes tested for hereditary hemochromatosis?
Getting your genes tested for hereditary hemochromatosis could actually save your life! And right now, during National Menopause Awareness Month, there is a way to get your genes checked for HH for $50 off the normal cost. Let me explain why this is so important…(Note: even though this offer has now expired, the testis well worth the current price.)
Many women who were born with genetic hemochromatosis don’t find out that they have the condition until they reach menopause; they stop losing blood every month and their body starts to accumulate iron. Of course, every body needs iron, but too much iron is toxic; when it builds up in your system you start to suffer the symptoms of iron overload. Unfortunately, if you are a woman of a certain age, your doctor may dismiss these symptoms as “just part of the change” and tell you they will just go away. But hemochromatosis does not go away, it is potentially fatal. You owe it to yourself to find out if you have it.
A few years ago I created the Facebook Hemochromatosis page and I have been shocked by the number of women visiting that page and describing doctor after doctor dismissing their symptoms as “the change” when in fact they have hemochromatosis. The result is needless pain, suffering, and sometimes despair. (I know this on a personal level because of my wife’s experience with hemochromatosis.)
So here’s my suggestion for Menopause Awareness Month: Treat yourself to the 23andMe genetic testing service. In a moment I will tell you how to save $50 on this highly acclaimed service that gives you a detailed analysis of your DNA, including the HFE gene, with less hassle and expense than going through your doctor just to get the HFE test alone.
How can I get my genes tested for hereditary hemochromatosis?
Spit! That’s right, spit. When you order the 23andMe gene testing kit they send you a small plastic container into which you spit. You then send that container to 23andMe and, within a few weeks, they send you a link to their secure website where you can review more than 200 health traits, including carrier status for more than 40 genetic variants including hemochromatosis (HFE), Gaucher, and Tay-Sachs.
At the same time, 23andMe will give you access to a wealth of ancestral information revealed by your DNA. In addition, you can participate in ground-breaking 23andMe research that has already uncovered important new findings about conditions such as Parkinson’s and diabetes.
The bottom line? If you find that you have the genetic defect which causes iron overload you can start taking steps to avoid the damage that untreated HH does to your body. The good news is that relatively minor changes to diet and lifestyle can avert the problems that undiagnosed hemochromatosis can start to inflect at menopause.
23andMe and National Menopause Awareness Month 2012
To mark National Menopause Awareness Month, the good folks at 23andMe have provided CelticCurse.org with a coupon for $50 off the current price of $299. (Note: even though this offer has now expired, the testis well worth the current price. Depending on your health insurance coverage the single genetic test for HH can cost a lot more than 23andMe. Some healthcare providers will refuse to prescribe the single test.) Here at CelticCurse.org we think everyone has a right to discover their own genetic information and 23andMe is a reliable and responsible way to do that.
1. Order your 23andMe kit
The home page of the 23andMe website is here. Let me just say that I have had a keen personal interest in genetics for a long time, so I read about the 23andMe service when it first became available and I ordered the “spit kit” as soon as I could afford to do so. I’m very glad I did. You may want to take some time to learn about 23andMe before taking this step, but if you are a woman dealing with menopause I strongly recommend getting started now.
(Just to be clear: I am not a doctor. However, I have studied hemochromatosis for nearly four years. I have seen first-hand the devastating and deadly effects of undiagnosed hemochromatosis. And I have spent a lot of time talking to people who are dealing with haemochromatosis in their lives. I firmly believe this is a classic case where knowledge = power. Knowing your HFE status will advance your quest for a longer, healthier life.)
The 23andMe kit makes it very easy to provide the saliva needed for the test and send it back to the company for testing.
3. Read you results
The 23andMe website is one of the best health information sites I have ever used. Your results are not dumped to a web page and left for you to decipher. They are presented in a logical and easy-to-navigate system. Each aspect of your DNA is explained. Each medical condition that affects you is described in detail. Your results for more serious conditions are held behind an information screen so that you learn what the results will mean before you see them.
4. If you are positive for HH, don’t panic
The next step is to talk to your doctor about a simple blood test to check your iron levels. Before 1996 it was normal for an annual check-up to include “the iron panel” of blood tests, but these days your doctor needs to provide a reason for ordering an iron panel. A positive result for HFE from 23andMe is ample reason to get this very inexpensive blood test. The results will indicate whether or not iron is already building up in your system. If it is, then your doctor will probably prescribe a series of blood draws, called phlebotomies, to reduce your iron to an acceptable level and keep it that way through periodic testing and blood donation.
Note that hemochromatosis does not stop you giving blood and your blood can be used by blood banks. Hemochromatosis is not an infectious disease, it is a genetic disorder.
If blood tests show your body is loading too much iron, you can reduce your iron intake through dietary changes. You should also cut back on smoking and alcohol consumption, both of which can contribute to iron buildup in your body.
Disclaimers and fine print
Who made this site? My name is Stephen Cobb and I created CelticCurse.org–in my own time and at my own expense–to raise general awareness of hemochromatosis after my wife was diagnosed with it in 2008. I am not employed by 23andMe or any other health-related organization. I receive no financial benefits from this 23andMe offer. This offer is the result of discussions I had with 23andMe about the phenomenon that I call “hemo-pause,” meaning the confusion of hemochromatosis symptoms with menopause symptoms leading to delays in diagnosis and treatment of hemochromatosis. These discussions began after 23andMe published a series of blog posts about hereditary hemochromatosis during July, which is National Hemochromatosis awareness Month.
What if I can’t afford $299 for a genetic test? The cheapest way to find out if your body has a problem processing iron is to get a blood test called an iron panel. Any doctor or clinic can order one of these IF you present with risk factors for, or symptoms of, some iron disorder (you can read what these are on the web pages listed below). I have heard of people persuading their doctor to include an iron panel as part of an annual physical, which some health plans provide at no charge, but your mileage may vary.
For more information about hemochromatosis
- NIH: http://www.nlm.nih.gov/medlineplus/hemochromatosis.html
- Mayo clinic: http://www.mayoclinic.com/health/hemochromatosis/DS00455
- WebMD: http://www.webmd.com/a-to-z-guides/hemochromatosis-topic-overview
- Iron Disorders Institute: http://www.irondisorders.org