Friday, July 3, 2009

Very Super-suspicious

As it turns out, I have a monitor on my web page that can tell me at a moment’s notice just how many people have visited my website, the city and country where they live, and how much time they have wasted reading my deathless prose. Many of them have been trying to find out detailed information about hemochromatosis, Googling this way and that. With my same little monitor, I can know which words they used in their search engine that brought them to my blog. I find it really interesting that many of them have wanted to know about famous people, how many famous people suffer from my little genetic condition. Odds are, if there are more than 250 famous people in the world, one of their number would be afflicted. When a person types in “hemochromatosis famous people”, my little blog usually shows up in the top five. The searcher dutifully reads my comments which, of course, help them in no appreciable way. The only famous person mentioned in my text in the same breath with “hemochromatosis” is Joni Mitchell, who, as far as I can tell, is not a partaker of our little malaise. I can imagine how disappointed some of these folks must be. I wonder if any of them mutter less-than-salubrious commentary as they “page back” to better sources. In an effort to be a benefit to my readers, I have decided to help these erstwhile researchers out a little, I have decided to do a little research of my own.

My contribution here is not as altruistic as it might seem in the beginning. I was at a loss as to what to write during the next few weeks. “Dancing on the Edge”, my other site, is eclectic enough that I can make regular forays into the arcane on a regular basis. “Hemochromatosis” requires a catalyst of some kind. For some reason, after posting to “Dancing” this last week, I began to have a song go through my mind, one recorded by Stevie Wonder many years ago, thirty years ago in fact. I went to YouTube and listened to three or four versions of it and decided to put the song in my playlist. In an attempt to intellectually honest, however, I asked myself how I could do this without making some sort of reference to my affliction. I decided that I could not, so like any enterprising young man, I tried to make a connection between Stevie Wonder and hemochromatosis. Googling the three words sent me to an interesting website called “BC: Biocritics Sci/Tech”. There I found Stevie Wonder mentioned by name in an article about “simultaneous Arabic translation” (I bet that guy's blog gets a lot of hits too). I read the entire article trying to find “hemochromatosis”; there was nothing. I sort of felt like one of those folks that had been duped into reading my blog after a strenuous fourteen seconds of research. Then I noticed in one of the side-bars an article on hemochromatosis which actually talked about famous people who probably had the genetic condition. Okay, there is the connection between Little Stevie and hemochromatosis and my playlist makes sense. Now on to the famous people.

The article, “Even Celebrities Are Not Immune To Iron Overload -- Speculation and Proof”, is aptly titled, unlike my own little bits and pieces. There is an enormous amount of speculation and the “proof” is about 90 out of 200. The author suggests that Jackie Onassis’ father, Black Jack Bouvier, probably suffered from hemochromatosis because of his dark tan and liver problems. Of course, Black Jack may have spent a lot of time perfecting his sun tan while sipping mint juleps on the patio. In any event, BJB is someone famous, and there are not many of us famous HH types, so we probably ought to include him.

The next fellow that the author suspected as having been afflicted with iron overload was Steve (Terrance Steven) McQueen. I really like it when insiders let us know what the real names of famous people are. I have two of my own: John Ronald Reuel Tolkien and Clives Staples Lewis, neither of whom had hemochromatosis. Steve thought he was dying of overexposure to asbestos. After I read his medical history I decided that the “Great Escape” artist died of multiple “injections of live cells from cows and sheep, coffee enemas, frequent shampoos and massages”. According to Wikipedia, McQueen died of cardiac arrest after undergoing surgery for several large tumors in his abdomen, tumors directly related to mesothelioma. All illnesses aside, Steve McQueen’s best movie was the “Thomas Crown Affair”. I say that it is his best because it’s the only one I have watched clear through, that and “Papillon”.

Next in the litany of hemochromatosis sufferers are the Hemmingways: Ernest, his silblings Ursula and Leicester, his father Clarence, and his granddaughter Margaux. Some sorts have suggested that his suicide and those of the afore-mentioned members of his family happened because of the iron overloading in their brains. Marguax killed herself because of all of the stress associated with the odd spelling of her name. In the case of Ernest, however, it seems reasonable to assume that the extensive electric shock treatments that he received at the Mayo clinic did not do much for his bouts with depression and memory loss, the self-professed reasons that he gave for not wanting to live. All of the Hemingways suffered from alcoholism, a problem far more injurious to the brain than iron-overloading.

Our author also claims that John Steinbeck suffered from hemochromatosis because his son died of the condition. That Steinbeck was a carrier is a given; that he suffered from the disease is not certain. He died of a heart attack caused by the complete occlusion of the main coronary arteries. That effect is caused by over-loading of another kind, not by excessive iron.

Frankly, I think that we ought to look to the real celebrities of the matter. My sister for example. She has to be one of the most famous hemochromatosis sufferers on the planet. She has appeared repeatedly, has been featured prominently, in one of the most widely read websites on the disease: mine. If you were to Google “hemochromatosis” right now, you would find more than 866,000 hits on the web. If you were type in “hemochromatosis” and just about any other word in the English language, like say “Stevie Wonder”, you would find that my blog is listed in the top five out of the 866,000. More than 2600 people world-wide can’t be wrong. That literate body constitutes .0000433 percent of the world’s population, a bevy of geniuses visiting my blog on a regular basis, and every single one of them knows Judie. Now that’s notoriety! Think of it! Without her, you would not be reading any of this stuff!

In the meantime, turn up the volume and click on Little Stevie Wonder’s funky 1972 bit “Superstition” in my playlist. It will make you feel happy (no depression), you’ll give up drinking (it’s hard to keep the rhythm with a snoot full), and you will feel less inclined to stick your finger into a lamp socket (and, as an added benefit, you’ll look less and less like Michael Richards). What could be better than that?


Trillium said...

What about "The Great Escape"? :)

Judie said...

Well, now that was interesting and to think I got so popular in my brothers blog. I am sure you have typed in my name on google and realized that I (like you) fill up at least the first page of the search. You see I have more things than hemochromatosis going for me. But you are correct, this never would have started if I had not pushed, prodded and begged you to get checked. Makes you wonder where we would be.......

Zaphod said...

Trillium: I actually have not watched "The Great Escape" all the way through in a single sitting.

Judie: "Hemochromatosis" plus "Judie" is number three on any Google search. What a world!

Judie said...

Well isn't that interesting. Now if you take hemochromatosis + judie + parliamentarian + scholarships I should be able to fill up a couple of pages. Talk about monopolizing the internet.

Rusted Nut said...

Nice to know some famous folks have suffered along with us throughout the years. I feel better now. And again, your playlist rocks! Go Stevie!
Stay well, stay aware.

Judie said...

I still would like to know who Rusted Nut is. Nothing comes up when you click on his name.

Elaine said...

Re: Steinbeck, you may want to go to the website of the Canadian Hemochromatosis Society and see the cover of Nancy Steinbeck's book. In it there is link, and herewith her tribute to Marie Warder's book, The Bronze Killer.
"I came across the Canadian Hemochromatosis website seven years after my husband, John Steinbeck IV, son of the American author, died of complications related to HH during back surgery. I was researching the disease for my book, “The Other Side of Eden”, which contains my husband's posthumous autobiography. I learned more useful information from that site than I had in the fourteen years since John had been diagnosed with HH.
"The first symptom we noticed was that his skin turned a peculiar shade of green. We were living in Kathmandu at the time and often Tibetans would stop him in the street to compliment him on his bronze tan. "You look like one of us," they would tease.
John was tired all the time and his joints ached. Shortly thereafter, he was diagnosed with cirrhosis of the liver. His gall bladder was removed due to severe abdominal pain, but that, too, can be a symptom of HH. Later, his doctor suspected Addison's disease. Only when the HH was full blown did an internist diagnose John correctly. By then, it was too late to save his ravaged organs.
"From the onset, and as the disease progressed, our children and I struggled with John's mood swings, violent outbursts, severe depression and anger. We were never told that those symptoms, which mimic mental illness, were part of the disease, as was his inability to communicate, sleeplessness, loss of memory and emotional withdrawal.

While these symptoms have had profound and long lasting effects on our psyches, it would have been so much easier to work with John's mental and emotional states had we known about the psychological effects of HH. Most confusing of all was the way these mood swings appeared after periods of relative calm.
"My husband developed diabetes in 1990 and died in 1991 during a back operation because the doctor neglected to take his complicated medical history into account. Due to the toll HH had taken on his body, John was never an appropriate candidate for surgery. The doctors chose to ignore the radiologist’s recommendation for further testing and he died on the operating table from a pulmonary embolism. This was the final injustice; a doctor who didn't have a clue about the severity of HH's effects.
My children and I are very grateful to Marie and Shaun Warder for their passionate dedication to educating and enlightening the world about the effects of the Silent Bronze Killer. Thanks to them, this disease will never mutely effect and confound patients and their families as it has in the past.

Nancy Steinbeck

Elaine said...

Regardind statements I have made concerning the "woman who made the worls aware of Hemochromatosis" and "The world's most famous HH patient" I consider the following link to be the best proof of all.

Sharon said...

I am a 44 year old woman who suffers with HH. I hope that more and more people become familiar with this killing disease. Steve McQueens daughter died at 39 from HH.

I just watched a special on Steve McQueen, and they fail to mention that he had HH. Luckily for myself, I had a PDR in my home at the young age of 20. This allowed me to realize that I needed testing early. I have spent my life watching my iron intake, drinking tea, (which inhibits iron absorbtion) and now, I have had a gastric bypass to stop not only the diabetes I have developed, but to hopefully end the dreaded bloodlettings that I was having to endure.
I am praying, that like others, who have had this procedure to try and eliminate their iron stores, that I have finally found my cure. This disease is a KILLER, and a needless one at that.
My father committed suicide at 59, when I was 11. I do not wish to follow in his footsteps. I am keeping my fingers crossed, and will update you of my progress.

tammy0503 said...

I looked up Steve McQueen and hemochomatosis because I (female) was diagnosed at 36 yrs. and was told it was impossible for a woman to have HH, I am C282y/C282y premenapause. My father, had his first massive heart attack at 58 yrs and was dead by 61 yrs of his 2nd massive heart attack. He refused to believe he even carried a gene! He always looked very dark complextioned to me but very red (he had auburn hair). So I was looking to see how Steve died knowing he always had a tan. I suffer with diabilitating arthritis in my spine & body among other problems.

Elaine said...

You should check out

Elaine said...

If you do link in to the wikipedia article on Marie Warder, perhaps you can check other links to people with HH.

Elaine said...

"During his final years, Hemingway's behavior was similar to his father's before he himself committed suicide;[149] his father may have had the genetic disease hemochromatosis, in which the inability to metabolize iron culminates in mental and physical deterioration.[150] Medical records made available in 1991 confirm that Hemingway's hemochromatosis had been diagnosed in early 1961.[151] His sister Ursula and his brother Leicester also committed suicide.[152] Added to Hemingway's physical ailments was the additional problem that he had been a heavy drinker for most of his life.[112] Writing In "Ernest Hemingway: A Psychological Autopsy of a Suicide", Christopher Martin evaluates the causes of the suicide: "Careful reading of Hemingway's major biographies and his personal and public writings reveals evidence suggesting the presence of the following conditions during his lifetime: bipolar disorder, alcohol dependence, traumatic brain injury, and probable borderline and narcissistic personality traits".[153] Martin claims suicide was inevitable because Hemingway "suffered from an enormous burden of psychiatric comorbidities and risk factors for suicide", although without a clinical evaluation of the patient, Martin concedes a diagnosis is difficult.[153]" The part about diagnosis of HH being difficult is sheer nonsense!

Marcie Nessan said...

I have genentic hemachromitosis and was diagnosed about 8 years ago. My thyroid went crazy about 10 years ago. Now I have nodules in my thyroid and more tests next week. I really wish someone had run tests to know about this long ago so I could have understood more about the food I eat and didn't eat. Now I'm trying to stay comfortable.

Pierre Fontaine said...

is it a pun or an irony of fate that in this phrase : "Marguax killed herself because of all of the stress associated with the odd spelling of her name." you do misspell her name ?

Unknown said...

Yes, HH hits your brain. My HH was discovered by having testosterone around 60 and I am a male. I was 36, then and now a couple of months shy of 40. I had an MRI done and iron was found in my pituitary. It took months for my hemoglobin to rise to 12 so that I could begin phlenotomies. The pituitary gland effects testosterone and testosterone effects hemoglobin. I am largely Irish and my body feels like a 70 year old that has survived a train wreck. I have felt bad for 10 years and never knew the reason. I continue to work, but am moody and get little rest. I used to do powerlifting and now I don't even go to the gym. I am on testosterone therapy presumably until I leave this mortal coil. Anyway, I write this hoping that anyone who experiences mood swings without prior mental illness, has no energy, terrible headaches, and goes from a great sleeper to an insomniac takes the time and forks over the small change to get tested for HH. If not, you may get by without much damage, but otherwise it can and likely will knock off a few decades of life. Best to you all and God bless. Jason.