Chronic Pain and Hemochromatosis: How bad can the bad news get?

by Stephen Cobb on June 10, 2012

Hemochromatosis can create and/or exacerbate a lot of problems for your body, including but not limited to diabetes, liver disease, liver cancer, heart disease, and joint/spine problems. The last item, which can produce deep and unrelenting pain, is sometimes overlooked in the general “What is Hemochromatosis?” literature. There may be a good reason for this: Raising awareness of a problem–and hemochromatosis is nothing if not a problem–requires a delicate balance between good news and bad news.

I am deeply familiar with the good/bad news balance from my decades of work in computer security awareness. Indeed, my current job title is Security Evangelist, and my tag line is “I bring you good news about Internet security, as well as some bad.” (FYI, the Celtic Curse website is something I do in my own time and the views and opinions stated here are mine and not those of my employer.)

As an example of this form of evangelism, last week my colleagues and I put up a blog post about the hacking of LinkedIn passwords. We made sure that the point of the post was not “Oh my god is nothing safe/sacred any more?” but instead: “What can I do to protect myself when using LinkedIn?”

In other words, if the only thing you can convey about a problem is that nothing can be done about it, your audience is going to be limited, and certainly smaller in number than the total number of people who need to hear about the problem. Thus it is with hemochromatosis, starting with the observation that you can prevent or forestall or mitigate some, if not all, of the problems caused by hemochromatosis if you diagnose it early and then treat it promptly. This is particularly true of genetic hemochromatosis, by far the most common form of the condition, which can be diagnosed in children and babies for less than $200. Adults may find even more cost effective tests, like my preferred choice, 23andme.com, which provides hundreds of genetic results both ancestral and medical for a relatively modest fee (e.g. currently $299 versus $195 for a single HFE-specific test).

As a parent I would a. get 23andMe, b. see if I was a carrier of genetic hemochromatosis, and if so then c. have my child checked as soon as possible, d. inform my genetic relatives. Then I would get my iron levels checked, and those of my child. That way, people who need to manage their iron intake can start doing so right away. After all, if your body has a genetic tendency to absorb iron you probably don’t want to eat Wheaties and burgers every day because they are packed with iron.

All of which is good news in the sense that early detection can reduce the damage that untreated hemochromatosis can cause. The bad news is that things can go very badly if the detection and treatment come later in life, which is what happened to my wife, detected as homozygous C282Y genetic hemochromatosis in 2008. Now she is living out a nightmare scenario in which her chronic pain is not being treated.

{ 1 comment… read it below or add one }

nancy bennett August 23, 2012 at 6:26 am

Hi Stephen – I am writing to you as a patient of many doctors who seem to not be able to figure out what is wrong with me. Only by chance, because of going to an immediate care center ( aka – walk in clinic) this past Saturday and finding out that i have mononucleosis again did they also find out my liver enzymes are slightly high. The doctor at the clinic, who seemed to be very puzzled did many teats thinking some thing autoimmune was happening with me founf that autoimmune it looks like I’m fine. All my doctors are puzzled. These are my thoughts without having talked to the doctor yet and only my thoughts because i came accros hemochromatosis this morning on the internet. Accept for weight loss i fit all the symptoms. I have been experiencing all these symptoms for about 4 years now to no avail. My father just passed away in May to liver disease. We are in Florida and when were spreading his ashes a couple of weekends ago and we were out in the sun I noticed for the short time I was out in the sun my skin sure did tan up quick in a weird way. I do see the test that i need to ask for but having experienced this with your wife does any of what I’m saying sound familiar. Oh ya, the weight issues? I have gained with little appetite and stomach pain. My weight gain has been a mystery as with the joint pain, pain under right ribs, severe fatigue (some think fibromyalgia and or chronic fatigye synd.), muscle aches. The pain in my abdomen the dr.s can not figure out. Thank you for listening!

Nancy – Belleair Fl. 42yrs.

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