Showing posts with label iron overload. Show all posts
Showing posts with label iron overload. Show all posts

My 2025 output, from jagged AI to video takes, with sides of cybercrime, infosec, medicine, and anti-misogyny

  January 05, 2026    


This short video was a fun part of my AI-cybersecurity work in 2025
 
As one year ends and another begins I find it helpful to look back at what I managed to accomplish over the last 12 months, even as I plan for the next 12. Back when the study of cybersecurity was my full time job, this process was an annual ritual, often embodied in weighty reports that sought to capture the implications of one year's cybercrimes for the next year's defensive strategies. 

----- D R A F T -----

Around the middle of 2019, cybersecurity ceased to be my full-time job as I retired from my role as senior security researcher at ESET, one of the leading makers of security software. My intention at the time was to move to England to support my mother who was entering her nineties, write my next book, and put out content that might attract some conference speaking, teaching, and consulting work.

Unfortunately, I had not factored in the changes to British society caused by the government's official policy of hostility to foreigners, including my American wife. She was forced to undergo a long and deeply distressing visa process before she could even enter the country, and suffered a serious brain haemorrhage before that permission was granted. That turn of events resulted in my transition to primary carer/caregiver for two people, my nonagenarian mum and my brain-damaged wife.

What does all that have to do with my 2025 output? Well, as you can see from the following snippets, my attention has been split in several directions. There's cybercrime of course, particularly the tension between institutions urging people to "just go online" and the grim reality that having any kind of online presence these days increases your chances of being scammed, defrauded, stalked, or otherwise assaulted and abused. I posted some of my work on this to Substack, a platform that I started to favour in 2025.

Quite a lot of my 2025 output was related to artificial intelligence, partly because I was fortunate to get several AI-related teaching gigs early in the year.  One of these was for the Computer Science department at Bridgewater State University, Massachusetts. I presented two versions of my "AI and Cybersecurity" class to students taking a course in computer forensics. 
In May, I was invited to conduct a three-hour online course with the grand title of AI and Cybersecurity: Seizing the Opportunities, Defending Against the Threats, Navigating Legal Risks (currently available to purchase, but I don't get any royalties). 

This was a great opportunity to be remunerated for digging deep into several areas of great interest and concern, areas in which I have a lot of history. (I was fortunate to have spent my last eight years of regular employment working with cybersecurity experts who had pioneered the use of machine learning, neural networks, and artificial intelligence — and I mean real experts, not techbros seduced by AI hype).

Teaching that course led to another opportunity from the same source (the father and son team of David  and Mark Jacobs, experts in IT consulting and legal training respectively). I provided the opening talk for an online conference in October focused on AI and IP.

That was timely because my partner and I had just discovered that unknown number of the two dozen books that we have authored since 1992 were among the pirated volumes that the company known as Anthropic downloaded and used without permission. Thankfully, several authors sued Anthropic in a case that is referred to as Bartz v. Anthropic. The Authors Guild says the class action suit was "brought by authors against an AI company for using books without permission to train large language models." Naturally, we wrote about this and listed which of our books might be involved.

In June, I realised that 2025 would see the 30th anniversary of the first macro virus and so I started writing an article about this. For those not steeped in the history of malicious code, the appearance of a macro virus "in the wild" was a big deal. In fact, it made a difference to my life. I'd been working on the computer virus problem since the late 1980s, covering it in my 1992 book on computer security. By the start of 1995 I was working for the National Computer Security Association which established the first commercial testing lab for antivirus or AV software. At that time several AV products were proving to be very effective when properly deployed and managed, to the point where I was thinking "problem solved, or at least solvable". 

The Word macro virus vastly expanded the scope of the problem and introduced an information system attack strategy that is still used today, by criminals and state-aligned actors, like ransomware extortionists and spy agencies. My 30th anniversary article was written to highlight the fact that the macro virus was made possible by a selfish decision on the part of Microsoft, and that fact should be a red flag for the "add artificial intelligence to everything" economy. Here's a link to the article:


Ironically, while researching the macro virus article, I found a glaring example of how the use of AI can go wrong. Naturally, I wrote about this and published an article online:

My research into the workings of AI and its impact on society continued with a novel hypothesis: if AI is going to help humans get things right, which is what a lot of politicians and investors were saying in 2025, what does AI think we should be doing about cybercrime? And what weight will that thinking carry in the real world.

So, I set about conducting structured interviews with seven different AI models. The results were very interesting to say the least. This led to an article I published on Medium titled: "ChatGPT Says Cybercrime Is a Pervasive and Damaging Global Threat, Other AI Agree."

Here's what Claude Sonnet AI said: "The state of cybercrime in the world today is alarming and deeply entrenched. It's a highly adaptive, technologically advanced, and pervasive global threat that consistently outmaneuvers reactive security measures." The other AI were of the same opinion, with ChatGPT volunteering this assessment: "Without major shifts in global cooperation, regulation, and investment in digital resilience, the outlook remains grim." I compiled and annotated a full transcript of the interviews in a 42-page report: Cybercrime According to AI: a dire and rapidly escalating crisis.

That project helped me define a threat to both AI and society that nobody else seems to be talking about: unchecked cybercrime reduces trust in technology to an extent that prevents AI achieving the ends that justify the means being ploughed into it. For example, the ability of AI to achieve medical breakthroughs will be limited if people won't share their medical data because criminals keep abusing such data for selfish ends. So, I asked several AI what they would like to say to world leaders about this. One response was published on LinkedIn: An Open Letter to World Leaders from ChatGPT-5.

I also reworked the structured interviews for a LinkedIn article and led with a quote from Google's Gemini LLM. To be honest, I spent quite a bit of time and effort trying to find the right platform for my research-related articles: Medium, Substack, LinkedIn, my YouTube channel, or our blog. Speaking of blog content, I did make a page for the topic of AI on the Scobbs Blog and another for Cybercrime and Health.

Speaking of health, I was prompted to revisit the topic of haemochromatosis in September as a by-product of dealing with Chey's declining health. Now that Chey is a UK citizen we spent quite a bit of time working through the process of getting her some support as a housebound patient with cognitive issues, plus some help for me as primary carer/caregiver for said patient. I might share more of that journey in 2025, but here's the haemochromatosis article, a good basic introduction to the topic:

In October, I also refreshed my page on Primary Aldosteronism, also knowns as Conns, a leading cause of heart disease that is curable for many these days, given the advances in medical technology this century. The fact that millions of people who have this condition are not diagnosed or treated forms the basis for an article I hope to complete in Q1 of 2026. It addresses the reality of "AI medical breakthroughs" and why we should not count on these making a big difference to human health.

Finally, in November, I turned my attention to something of which we will see a lot more in 2026: misogyny and other ugly manifestations of male supremacy. I am sick of this, and the men who perpetuate it. Knowing how best to oppose this is challenging but awareness of the problem is clearly a first step. And clearly there are a lot of straight white cisgender men who don't yet see just how different, and difficult, life is for people who are not. To help open some eyes and minds I wrote: Lifting awareness of male supremacy: an elevator pitch with a twist. 

So, those are the highlights of my output in 2025, but somehow it feels like I'm missing something. Ah yes, my annual look at the IC3 Internet Crime Loss statistics. This came out in April, and this year's title was: 2024 sets a record for cybercrime losses and at $16.6 billion it's a lot higher than I predicted. I am predicting a new record of $20 billion in the report that should arrive in April, 2026, a fivefold increase in five years, further evidence that too many humans are missing the point when it comes to cybercrime.

Speaking of missing, I did miss several events in 2025 due to my responsibilities as a carer. One of these was DefCon, the annual hacking conference, which I first attended 30 years ago. As you can see, I have the t-shirt to prove it, and yes, I did write about that. 

Here's hoping you find some of my 2025 output to be at least one of these:
helpful, informative, entertaining

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Hemochromatosis, haemochromatosis, and iron overload redux

  September 01, 2025    

A large wide red rectangle contains a small cloud of text relating to hereditary haemochromatosis and iron overload
Haemochromatosis: the most common genetic killer of folk from the British Isles and their descendants

Back in 2008, while I was living in America, a big word became a big part of my life: hemochromatosis, pronounced he-moe-kroe-muh-TOE-sis (spelt with an extra 'a' in the UK and Australia). 

According to the Mayo Clinic, hemochromatosis is a "condition that causes the body to absorb too much iron from food," commonly referred to as iron overload. Most cases of hemochromatosis are due to a genetic condition, referred to as hereditary hemochromatosis in America (HH), and genetic haemochromatosis in the UK. 

The problem with excess iron is that our bodies store it in our organs, especially the liver, heart, pancreas, and joints. This causes damage to those organs and can lead to life-threatening conditions, such as liver disease, heart problems, and diabetes. It can also cause life-limiting conditions like chronic fatigue, severe depression, and loss of libido. 

Yes folks, despite the fact that our bodies need iron, and having too little iron can be a serious medical problem, iron is one of those things of which a person can have too much. Unfortunately, iron overload can occur "naturally" in  people who have certain genetic mutations that affect a particular gene that plays a central role in regulating iron absorption in the body. 

The gene genie

The gene is known as HFE and referred to as the Homeostatic Iron Regulator (see notes below for an explanation of why it is called HFE and not HIR). 

Just to be clear, there are several ways in which a person may develop hemochromatosis other than inheritance, but hereditary hemochromatosis, sometimes referred to a HFE hemochromatosis, accounts for the vast majority of cases.

But why is this big word in my life? Short answer: in 2008 my wife found out she has it. Also, she has suffered greatly from it and there's no cure for it. 

Furthermore, numerous members of her family had/have HH. To top things off: iron overload is seriously under-diagnosed in many countries, despite the fact that detection of it, and treatment for it, are relatively inexpensive.

Here's more clarification: not everyone who has the genetic mutations referred to above develops iron overload, and the percentage of those who do — referred to as penetrance — is debated. More recent studies are finding higher levels of penetrance, reflecting the still evolving understanding of how much damage iron overload causes.

Awakening and awareness

Here's what happened after my wife found out she had hemochromatosis: we researched it. We found that it is more common than most doctors have been led to believe, and that early diagnosis can prevent some of the symptoms that were plaguing my wife. 

We felt we had to do what we could to increase hemochromatosis awareness. Because she was quite ill at that point I took the lead and posted this on my blog: What Am I Thankful For? A diagnosis of hemochromatosis. That was Thanksgiving Day, 2008.

One of the first reliable source of information we found was the Iron Disorders Institute, a non-profit organization founded to address health issues arising from both excess iron and too little iron. The institute coined the term Iron-Out-of-Balance™ to describe this. Here's what the Iron Disorders Institute home page looked like in 2008, by which time the institute had been on the web for 10 years.


An impressively early adopter of digital technology, the IDI offered a range of free literature, prepared and reviewed by doctors. These PDF files were easy to print out and covered topics like: Hereditary Hemochromatosis Starter Kit, Hereditary Hemochromatosis Family Tree, Phlebotomy Guidelines, Genetics Worksheet. Over the years these have revised and update. Check out the current forms and charts page.

Some of the documents were designed to be handouts you could give your doctor, a great strategic approach to awareness and education given that many primary care docs and GPs have had little training related to hemochromatosis. I've lost count of count of how many times I have directed people straight to the Hemochromatosis Diagnosis Algorithm which includes the detailed guide to Hemochromatosis Clinical Management. 

During 2009, as Chey was undergoing gruelling rounds of blood-letting — the first line of treatment when someone has iron overload — we got to know the IDI's leader at the time, Cheryl Garrison. It is hard to think of a person who has done, or imagine a person who could ever have done, more to raise awareness of hemochromatosis than Cheryl. 

Apart from anything else, Cheryl wrote the book on eating right when coping with iron overload. Fortunately for us, The Hemochromatosis Cookbook actually came out in 2008 and we got a copy right away. We read the book and everything on the IDI website. Then we corresponded with Cheryl and attended several IDI meetings and conferences. 

I learned a lot during this time, from experts in the condition and people struggling with the effects of iron overload and its treatment. The latter, intense rounds of blood draws—technically termed phlebotomy or venesection depending on geography—can be exhausting and may get complicated. For example, veins get scarred and hard to find. In Chey's case she was fitted with a port, an internal medical device, also known as a port-a-cath or implantable port, that lies under the skin and connects to a major vein. 

Particularly worrying were the many tales of missed and delayed diagnoses that led to avoidable and needless suffering among patients with iron overload due to HH. This reality was reflected in a 2008 study by the Centers for Disease Control and Prevention (CDC) that found it was taking approximately 9.5 years from symptom onset for a patient to be diagnosed with hemochromatosis. That tracked closely with Chey's experience. 

Frankly, I was shocked by the extent to which so many doctors lacked knowledge of, or interest in, iron overload and hereditary hemochromatosis. Indeed, I came up with a cynical hypothesis: the profit-based American medical system was not interested in hematosis haemochromatosis because the treatment, namely phlebotomy, was cheap. On the other hand, if pharmaceutical companies ever developed a pill that could be prescribed to people suffering from iron overload, then there would be billboards to raise awareness of hereditary haemochromatosis all over daytime TV.

Taking action

By the end of 2009 I was read to launch my own efforts to raise hemochromatosis awareness, starting with a Facebook page. To the best of my knowledge this was the first such page on Facebook and I got the URL facebook.com/Hemochromatosis. Bear in mind that I was living in America at the time, hence the spelling.

This page, which I titled Fighting Hemochromatosis quickly attracted a lot of likes and followers (now at 10K and 11.1K respectively). I spent many hours responding to questions from visitors to the page. And I read dozens of disturbing personal stories people shared, further reinforcing my opinion that the medical community was failing, almost completely, to address a distressing and all too often deadly genetic condition.

The hemochromatosis Facebook page also showed me that a greater range of educational materials about the condition was needed. There was also a need to keep information fresh and updated as new developments occurred in the field of hemochromatosis.

To help meet these needs I launched a blog in June of 2010. I called it Celtic Curse, because that is one of the names by which haemochromatosis is known, arriving from its prevalence amongst people with Celtic roots. The first post was not lacking in ambition: The Work Begins Here: Teaching the world about the Celtic Curse. BTW, another old term for hemochromatosis in bronze diabetes, due to the tendency of iron overload to cause diabetes and skin discoloration resembling a tan.

Armed with a Google News Alert to catch fresh stories about haemochromatosis, I began to populate the blog with information. I cross-posted useful articles to the Facebook page and of course used a Celtic Curse account on Twitter to further spread the word. I experimented with paid message promotion on both Facebook and Twitter. (it didn't hurt that during this time I was helping a dear friend of mine advertise his digital advertising software, frequently rubbing shoulders with pioneers in digital marketing.)

Indeed, my involvement in "evangelising" haemochromatosis awareness got to the point where the Iron Disorders Institute and I were discussing a paid role to do the work full time; hence the business card seen here. Unfortunately, making that a reality meant finding funding for such a role.

Reality intervenes

By the time 2011 rolled ground, it was clear that Chey's body had been so heavily impacted by iron overload that she would never be able to work again unless there was some extraordinary breakthrough in medical research. (And such a breakthrough seemed increasingly unlikely given how dismissive I had found most medical professionals to be about haemochromatosis.)

Our prospects were further hampered by the fact that the mortgage fraud crisis and the economic crash caused by the ensuing banking crisis had wiped us out financially. So when I received, out of the blue, a relatively lucrative job offer from a respected security software company, I took that over pursuing a role in the fight against hemochromatosis. In order to maximise my returns on that opportunity, I had to cut down on the time I spent supporting the Facebook page and the Celtic Curse blog.

By 2019, we had made something of financial recovery and Chey's research into medicinal cannabis had yielded some positive results, not as a cure but as an aid to coping with her symptoms. This was facilitated by the fact that the aforementioned job was in California, a stat that has somehow managed to climb up the global economic charts despite letting residents consume cannabis legally. (california is now the fourth largest "country" in the world based on GDP, behind only Germany, China, and the United States itself, surpassing countries like Japan, France and the UK.)

We decided that I would retire and we would move to the UK to be near my mother who turned 90 that year. That's basically what we did; but unfortunately, during the process, which was made extremely stressful by Britain's vicious anti-immigration regime, Chey suffered a subarachnoid haemorrhage. That, and a second haemorrhage during Covid lockdown, further impeded my ability to maintain my online campaign to promote awareness of haemochromatosis. 

While I have embraced the role of carer for Chey—caregiver in US parlance, unpaid carer in UK terms—it does require a lot of time and energy. That is why I have begun the process to hand over some of the digital hemochromatosis awareness assets I have generated to an entity that can properly leverage them.

Further hemochromatosis fallout

There continue to be some bright spots as well as dark moments in the haemochromatosis story and this has always been the case. On moving back to my native island, I found that a charity called Haemochromatosis UK is doing excellent work in both awareness raising and support of haemochromatosis patients and families. They have helped push forward valuable research.

I have also found that researchers here are open to the idea that haemochromatosis is not just about discovering someone has too much iron in their system and then bleeding it out. It may be a lot more complex than that. There are indications that haemochromatosis can be a factor in long-term fatigue, despite iron levels being controlled. Better understanding of that might lead to improved treatment options and a higher profile for haemochromatosis in patient diagnosis, given that the UK medical establishment does tend to back efforts to reduce the occurrence of conditions that impose a burden on the national healthcare system.

I am also hopeful that the under-explored connections between fibromyalgia, sexual dysfunction, suicide, and haemochromatosis may get long overdue attention. 

Finally, I should mention the one aspect of haemochromatosis that I have gone out of my way to address: hemopause. This is a word I made up to describe a syndrome which is very real, namely the tendency for doctors to dismiss the symptoms of haemochromatosis as menopause in women of a certain age. As you might expect, I made a website about this. 

I identified the hemopause syndrome while processing the many accounts of visitors to the Facebook hemochromatosis page, comments on the Celtic Curse blog, and real life encounters. Hemopause arises from the overly patriarchal nature of medicine in the US and UK, and the prioritising of profit over patients in America. It also exemplify what can go wrong when a profession is dominated by males and male attitudes and thus, on the whole, disinclined to take seriously enough the pain and suffering of females. But that's a whole other awareness campaign and website!

Notes

The gene known today as HFE was first identified in 1996 by researchers seeking the genetic cause of Hereditary Hemochromatosis (HH). They found it on the short arm of chromosome 6 in a region known as the Major Histocompatibility Complex (MHC). 

(These are all terms I encountered for the first time back in 2009 when there were lots of thing I didn't know about genetics, like chromosomes have arms. Sadly but truly: there's nothing like a loved one getting disabled by a genetic condition to shove you up a learning curve.)

Apparently, this MHC region is home to many genes related to the immune system, including the HLA (Human Leukocyte Antigen) genes. Because the new gene's sequence looked similar to HLA class I genes but was distinct, it was initially named HLA-H (meaning an HLA-like gene). 

Unfortunately, the name "HLA-H" quickly became problematic because of confusion with the well-established HLA system. Geneticists thought name could mistakenly lead people to assume HLA-H had a primary function in immunity rather than iron regulation.

Another fascinating thing I learned from researching HH is that there's an official gene nomenclature committee (HGNC). It decided HLA-H needed a unique, unambiguous name that reflected its function rather than just its location. 3. Creating the "HFE" Acronym

The researchers and the nomenclature committee decided to change the name. They created the acronym HFE from the H from HLA, followed by F from the suggestion that it might be related to the F gene in the MHC region (though this was not confirmed), then E from its potential similarity to the HLA-E gene. Thus we have HFE, the Homeostatic Iron Regulator.

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An Irish View of the Celtic Curse

  April 23, 2010    

I was browsing the Iron Disorders Institute web site last night and came across a story about hemochromatosis in an Irish newspaper. Since hemochromatosis is known as the Celtic Curse--on account of its relatively high rate of occurrence in persons of Celtic ancestry--I thought this would be an interesting perspective on my wife's condition (and it could be a story you missed if you searched for hemochromatosis because the spelling of haemochromatosis is used, as in England).

How Irish is the Celtic Curse? Across Europe as a whole the chance of someone experiencing iron overload are one in 400; in Ireland, it's almost five times higher at one in 83. And one in five people in Ireland carry the gene that can lead to this condition. Of course, the problem is not confined to the Emerald Isle. With so many people having emigrated from Ireland to North America over the centuries it shows up pretty widely here as well.

The article is a good introduction to the condition with enough detail to give you a clear picture of the implications without getting too technical. It's also an interesting non-American perspective. What it does not explore in much depth is the distinction between treatment of iron overload and treatment of organs damaged by iron overload.

In other words, it is relatively easy to reduce iron levels through blood donation, not so easy to cure the damage to liver, pancreas, heart, joints, and various parts of the endocrine system. Indeed, some of that damage, due to failure to diagnose hemochromatosis at an early stage, can be permanent and leave a person--as in my wife's case--with a pretty miserable quality of life. That's why there's a great need to increase awareness of the Celtic Curse in the general population and in the medical community.

Which brings me back to the Iron Disorders Institute. It is an institution worthy of support. My wife recently completed a detailed study the Institute is doing on the experiences of hemochromatosis sufferers. My guess is that it will reveal a shocking lack of knowledge about the Celtic Curse in the American medical community, and a dire lack of treatment for all its effects.

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And the Damage Done: Hemochromatosis recap

  July 20, 2009    

ironThe following is a recap of things I have learned from my partner's experience with hemochromatosis, a.k.a iron overload. I wrote this up for a support forum which is private, but I thought it would be helpful to make it available to anyone looking for information on this insidious condition. BTW, the circle+arrow symbol on the left is the alchemical symbol for iron, and yes, it is the same symbol that is used for the planet Mars and for the male of the species (I'm not going to touch that one, I have a hard enough time avoiding "ironic" puns when writing about this stuff).

[Disclaimer: I am not a doctor. Seek medical advice before acting on, or drawing conclusions from, anything I say here. By all means Google this stuff, but do so sensibly (check the bona fides of the folks writing what you read, distrust any site that is selling a cure, and look for the HONcode which is a good sign).]

When blogs or online forums mention hemochromatosis, also known as iron overload, they often leave you with more questions than answers. This is not surprising because hemochromatosis is widely misunderstood (and widely under-diagnosed e.g. if you know someone who has been diagnosed with chronic fatigue or fibromyalgia you really should check out hemochromatosis--if untreated it can kill).

You often hear "hemochromatosis can be treated" as though that was the end of the story. Not so...

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Adult Growth Hormone Deficiency: The 21 signs and symptoms

  May 12, 2009    

So, in the continuing iron overload saga, it now appears that my wife's hemochromatosis has had three major impacts, or impacted three major glands (thyroid, adrenals, and pituitary). Although a course of phlebotomy is underway to treat the hemochromatosis, dealing with damage to the glands is more complicated.

Consider the Human Growth Hormone deficiency due to the damage to the pituitary. It's not like HGH is something you can get over the counter at the local pharmacy. The substance itself is unstable, requiring special handling, and it very expensive to produce. And thanks to years of mindless abuse by selfish greedy so-called "athletes" HGH is not easy to get (in the State of New York it's a controlled substance, with all the hassles that designation entails).

On the upside, there is some good support out there for sufferers of human growth hormone deficiency, which mainly occurs in children. The adult version is known as Adult Growth Hormone Deficiency or AGHD. I was amazed to learn how much of an impact AGHD can have on a person. Consider this list:

  1. weakened heart muscle contraction and heart rate

  2. increased arterial plaque and blood pressure

  3. elevated lipids or fats in the blood (cholesterol, LDL, triglycerides)

  4. decreased exercise capacity due to decreased cardiac output

  5. decreased energy due to decreased metabolic rate

  6. abnormal body composition (increased abdominal obesity--waist to hip ratio)

  7. decreased bone density due to decreased synthesis of bone

  8. increase in fractures and osteoporosis

  9. decreased muscle strength and muscle size

  10. decreased lean body mass

  11. increased fat mass

  12. low blood sugar (dizziness or fainting weakness or tiredness, headaches)

  13. poor concentration or memory

  14. decreased sexual desire

  15. sleep problems

  16. shyness

  17. withdrawal from others

  18. nervousness or anxiety

  19. decreased social contact

  20. sadness or depression

  21. feelings of hopelessness


The bad news is, my wife has experienced all of these. The good news is, HGH could reverse any or all of these. So if you read the list as one of positive possibilities it's quite exciting, like #5: "Increased energy due to increased metabolic rate." I know she'd like that!

Of course, there's a long way to go yet. AGHD is a pretty nasty thing to be hit with. When I first looked over this list and got to number 21 my reaction upon reading it was: "That's entirely understandable!"

List source: Human Growth Foundation metabolic rate"

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Need Help Dealing With Hemochromatosis? Join THE list

  April 17, 2009    

Each time I blog about hemochromatosis I hear from people affected by this daunting and life-threatening condition. Often these people are frustrated with doctors failing to recognize the condition and with the slow pace of diagnosis and treatment. Fortunately, if you are one of these people, there is a supportive community you can join, online, via email.

It's called The Excess Iron List, and it includes people from all over the world, people who are dealing with this condition, supporting each other through sharing their experiences. But before I give you the link for this, I want to point out that it is an email discussion list, not an online forum or chat room. That makes it one of the oldest means of getting together over the Internet.

If you haven't used one of these lists before it can seem a bit strange at first (just to be clear, when you join, you are NOT being put on a public mailing list to get unsolicited information--and the list is moderated by a person, not a machine). The basic operations, like joining the list or leaving it, are carried out by you sending blank email messages to a special email address. For example, to join you send a blank email to: ExcessIron-on@mail-list.com

Fortunately, when you do that, you will get a reply that explains how the system works. The big payoff is being able to share with other people who have an interest in iron overload. So, if you're interested click here for details of The Excess Iron List. The page is hosted at the Iron Disorders Institute, a reputable source for information about hemochromatosis.

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Hemochromatosis Marches On: Now paging nurse-with-big-needle

  April 06, 2009    

Well, I went the whole month of March without blogging about hemochromatosis, more specifically, my wife's hereditary hemochromatosis or HH. However, March brought good news on the HH front: The blood-letting has begun!

(BTW, I trust people "got" that the image which accompanied my February post on phlebotomy was the barber's chair from Sweeney Todd.)

No fancy graphics this time, but I am hoping to capture video of what happens when the phlebotomist draws Chey's blood, so read on. Early in March a hematologist prescribed a course of 4 weekly blood draws (part of the delay was the fact that Chey collapsed on the way to her first appointment with this doctor).

At this point, 2 of the 4 have been done. We don't yet know the effect on her iron levels, but I'm guessing there is still a long way to go. Why? Because the phlebotomist has to brace herself against the chair to draw the second and third vial of blood.

That's right, even though Chey has been fitted with a port to facilitate the process, the blood is so thick it is hard to suck out. As far as the phlebotomist, a.k.a. nurse-with-big-needle, is concerned, this is a likely sign of excess iron in the blood.

In the meantime, efforts to assess, fix, and/or compensate for, the damage that HH has done to Chey's endocrine system are ongoing. Unfortunately this is very hit or miss at the moment. Some days she feels almost okay, but many more days she feels extremely fatigued, emotionally dizzy, and prone to hot flashes of Biblical intensity. This emotional dizziness means going from frantically alert and in danger of sleep drepivation, to mordantly comatose with generalized body pain, with outbreaks of uncontrolled weepiness in between. In other words, no fun at all, not to mention a real strain on the washing machine.*

But we're not giving up home on the phlebotomy treatment. The hope is that reducing the iron in Chey's system will enable some of the damaged or under-performing organs to rally and return to normal. After all, this is the year of Hope.

Ed: Sorry if the washing machine reference was a bit obscure. It comes from the fact that Chey has to change clothes many times a day when she gets these soaking sweat attacks. Think of cartoon sweat, squirting from a person's head...it's like that only for real. I kid you not.

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Crash Team to Oncology Stat: The latest iron overload episode

  February 27, 2009    

speakerThe medium may not be the message but it sure shapes it. I need to let a lot of people know what happened on Chey's long-awaited visit to the hematologist (that's haematologist for British readers).

Should I email everyone? Maybe use a bcc with a friends and family list? But then people would feel obliged to respond. Should I blog it and hope people will see it here? Maybe I should Facebook it? How about Twitter? Too late for that. But what the heck, here's how it would have appeared on Twitter if I had tweeted it, starting after lunch on Thursday:

zcobb: Heading over to Cooperstown to the clinic for Chey's hematology consult. Hoping this doctor will OK phlebotomy for her hemochromatosis. 01:50PM

zcobb: Just checked Chey into Oncology. She doesn't have cancer but apparently that's where hematologists hang out. Now headed to 2nd floor for my appt. 02:16PM

zcobb: Waiting for my quarterly checkup. No problems (apart from usual high BP/low depression). We synched up our visits to reduce carbon footprint. 02:23PM

zcobb: Sitting in Room D. Weight not bad (200lbs) BP not so hot. Wonder how Chey is doing. She seemed a bit woozy when I left her in waiting area. 02:28PM

zcobb: OMG, the PA just announced "Crash team to Oncology STAT" and I had this weird flash it could be Chey. But then I'm like "No way." 02:33PM

zcobb: Way. How to tell your day's gone off the rails: A nurse interrupts your meeting with your doctor to say "Your wife's been rushed to the ER." 02:46PM

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Iron Overload Fallout: Atrial fibrilation and so much more

  February 24, 2009    

I promise I am not going to turn this into The Hemochromatosis Blog but blogs tend to follow what's happening and hemochromatosis is what's happening right now to my best friend Chey.

It's happening because it's a progressive and incurable genetic condition. And it's also happening because new stuff keeps cropping up. Like today, I found two new things that generic iron overload can trigger (these are 'new' as in I never knew about them before). The first is arrhythmia, irregular heartbeat. If you've ever experienced arrhythmia, as in atrial fibrilation, you know it can be quite unsettling.

Well today, Chey was experiencing arrhythmia. So, I look it up on Google and what do I find: "arrhythmias are the most common cause of sudden death in hereditary hemochromatosis patients," according to this set of slides on Increasing Physician Awareness of Hereditary Hemochromatosis. (BTW, these slides by Dr. Kristen J. Schwall, from the Department of Internal Medicine at St. Barnabas Medical Center should be required reading for all doctors.)

According to the Journal of Interventional Cardiac Electrophysiology, hemochromatosis has been associated with atrial tachyarrhythmias and congestive heart failure as a consequence of dilated or restrictive cardiomyopathy. Oh that's just great!

Then as a side effect of Googling, I find a study published by the National Cancer Institute in 2003. This suggests that the two genes, C282Y and H63D, which are linked to hereditary hemochromatosis, may lead to an increased risk of developing colon cancer.

Doctors found that subjects with at least one copy of either of the genes were 40% more likely to have colon cancer than those without. (No word on what it means if you have two copies of C282Y, which Chey does, but I doubt that helps things.) They also found that the risk of cancer increased with age and greater iron intake. The researchers believe that at least 15% of the population carries at least one copy of the mutated gene. They think the study could lead to improved colon cancer screening protocols. Wouldn't that be ironic? Hemochromatosis screening gets funded as a colon cancer prevention strategy.

So here's the deal. We are waiting for a doctor's appointment on Thursday at which Chey's iron overload treatment should finally begin (if not, the hills around Cooperstown will probably ring with screams of "Why not?")

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The Problem With Bloodletting

  February 21, 2009    

bloodchairEric made an interesting comment on my last iron overload post. He wondered why my wife has not pursued phlebotomy as it is a recognized treatment for iron overload. Eric states "Blood banks are happy to see you because they know they will see you many more times than regular donors."

Eric's comment and concern are both appreciated. Unfortunately, we have hit a few bumps in the road on our way to bloodletting. Here is my current understanding of the situation. Please feel free to comment if you think I have got this wrong--we have heard of regional variations in the way some of these things are handled:

1. Around 1996 the US changed the rules for blood donation to exclude all persons who lived in the UK during the time of mad cow disease. That includes us, so we have not been able to give blood since then. In fact, Chey was a regular donor before this ruling and we suspect that stopping the donations at that time contributed to the build up of iron--her iron overload symptoms started to manifest after that.

2. Voluntary donations of blood are not accepted if less than 8 weeks apart. So, according to our doctor, a routine of accelerated phlebotomy to treat hemochromatosis requires a prescription (I know it sounds weird: a prescription to give something as opposed to take something).

3. Some blood banks lack a means of categorizing blood that is 'donated' by iron overload sufferers and so they do not accept it (apparently this varies by region). Strange but true (according to the Iron Disorders Institute Guide to Hemochromatosis).

So, common sense would indicate blood-letting is a simple fix but reality is proving less sensible. We have not yet tried the amateur freelance phlebotomy approach but we have been tempted (I just wish I had paid more attention to how you stop the flow of blood once it's been started).

And I should add that we are beginning to run into the "Dr. No" syndrome. That is the "Dr No. Big Deal" syndrome, when your doctor decides you're making too much fuss about your illness and starts telling you you're exaggerating. You hear things like "lots of people feel tired at your age" and "it's normal to feel depressed this time of year" and "your test results are close enough, nothting to worry about" (when in fact the results are clearly abnormal and frankly worrying). We are seeking to address this problem without alienating the medical profession in our small community.

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The Ongoing Impact of Iron Overload

  February 19, 2009    

I first posted about iron overload or hemochromatosis around Thanksgiving 2008. That's when my wife Chey learned she had this incurable, degenerative, and potentially fatal genetic condition. Since then we've learned a lot about iron overload (for example, as many as 1 in 300 Americans of Northern European descent may suffer from it, most of them undiagnosed and headed for an early grave).

We've learned that several of Chey's relatives suffer from the condition and others may have died of it. Death from untreated iron overload comes in several forms, two of the most notable being liver cancer and cirrhosis of the liver.  (If a relative is diagnosed with cirrhosis of the liver but they claim they don't drink much alcohol, they could be telling the truth. It could be iron overload.)*

Iron overload can damage other organs and glands besides the liver, such as the gall bladder, the pituitary and the thyroid. So, if you are diagnosed with hemochromatosis, your doctor will probably order a bunch of tests to check if there has been damage. A referral to an endochronoligist is likely.

In my wife's case the endocrinologist has already confirmed thyroid deficiency which he is now treating. Now he has  found, via a pituitary test, very low growth hormone. Some of the changes associated with GH deficiency are loss of energy, a loss of interest in usual hobbies or activities, and a decrease in sociability referred to as social isolation. "Patients suffering with this symptom do not like to go out and meet with their friends or social acquaintances. Patients may also develop mild depression or decrease in sexual function." All of which fits Chey. Oh, and untreated low growth hormone can spell early mortality in adults.

On the upside, it is possible that Chey's GH levels will increase when the iron overload is treated and all sorts of good things will follow, like more energy, more interest in life, more sociability, and so on. On the down side, we still haven't found a doctor to authorize iron overload treatment (namely phlebotomy, a.k.a. drawing blood).

We are getting closer, but still managing to fall through gaps in a set of health management practices that are clearly not adequate for dealing with this condition. Chey's iron levels are now twice what they were back in November when the original diagnosis was made. Her doctor is still reluctant to authorize phlebotomy, even though the nurse who took Chey's last blood sample said the blood was almost too thick to draw!

After much research we figured that the kind of doctor you probably want in this situation is a hemotologist. Chey has been trying to get an appointment with one for months. Last week she finally got one, for next week. Apparently people who don't have iron overload don't worry too much about the damage it is doing to those who do.

Pardon the cynicism, but I think it's understandable when you've watched the one you love decline physically for years while being told "it's all in her head." Then you've watched her suffer for months with terrible pain from a deadly condition that a dozen doctors missed, only to hear "Sorry, the doctor's are all on vacation this week, she'll have to wait."

So, we will see what next week brings. In the meantime I am researching the fraud cases that led to iron overload testing being dropped from standard blood panels in 1996, about the same time doctors realized hemocromatosis was a genetic condition. Talk about bad timing.
* See the next exciting Iron Overload episode: The Alcoholic Father Who Wasn't.

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Another Great Hemochromatosis Resource

  December 01, 2008    

Thanks to a comment on my previous post about hemochromatosis I can pass along another web resource for anyone looking to learn more about this common, dangerous, yet treatable condition. The Canadian Hemochromatosis Society web site at toomuchiron.ca has loads of information.

I'm very grateful to Bob Rogers, Executive Director of the Canadian Hemochromatosis Society, for pointing me to the site. I particularly like the way the "What is it?" page is written. It provides a very straightforward explanation of hereditatry hemochromatosis.

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What Am I Thankful For? A diagnosis of hemochromatosis

  November 30, 2008    

I have been trying to find the right way to write this post for about two weeks. Now we've arrived at the time of the year when it's traditional to speak of things for which we're thankful, I figured I would put it like this: I am thankful for a diagnosis, even though that diagnosis is hemochromatosis.

That might sound strange given what is written on the cover the "bible" of hemochromatosis, The Iron Disorders Institute Guide to Hemochromatosis:

It's Real • It's Common • It Can Kill You

And it's all true! If left untreated, hemochromatosis can kill you, often through some form of liver disease. And hemochromatosis is particularly prevalent among people of Celtic and Northern European origin. It is incurable. It is genetic. If you have it, you may pass it on to your kids. Here are the basics, as presented by the Iron Disorders Insitute:

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