Need Help Dealing With Hemochromatosis? Join THE list

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.

What broadband access means to rural areas

What broadband access means to rural areas such as ours - Times-Standard Online: "Of the 250 poorest counties in the United States, 244 are rural. So the promise and opportunity of new communications technologies to improve health, education and public safety for rural communities are particularly important to our nation."

Of Fighter Pilots, F-16s, Grim Reapers, Air Guards and Airlines

Last weeks' news item about "Suicide by F-16" sparked several thoughts, happily none of them suicide-related.

Have you ever experienced the "suddenly they're everywhere" phenomenon? For example, your friend takes you for a drive in her new car, a model you've never really noticed before, and in the next few days you see loads of these cars and it's like all of a sudden they're everywhere? Well the same thing happened to me with fighter jets. One day a pair of F-16s are scrambled by Wisconsin Air National Guard and the next I'm seeing all sorts of F-16 related stuff. Admittedly, I went looking for some of it. Like the Air National Guard thing. I was curious about how many American states have their own fighter jets. Turns out a lot of them do.

Have you ever flown into a commercial airport, on a commercial flight, but seen some military planes parked away on the far side of the airport? In America those planes often belong to Air National Guard of the state in which you are landing. Checking out the "local" air guard, I found that the military jets I had noticed at Syracuse airport, which I sometimes fly from, were F-16s from the 174th Fighter Wing of the New York Air National Guard.

Purely from a design and engineering perspective, the F-16 is an impressive machine. The design has a sports car look to it and performance to match. The F-16 has a thrust-to-weight ratio greater than one, which means it has enough power to climb and accelerate vertically. F-16s are used by several flying demonstration teams including the USAF Thunderbirds and the Royal Netherlands Airforce F-16 DEMOTEAM. The cockpit, which comes in one- and two-seater configurations, is designed so the pilot's position is semi-recumbent, rather than sitting up straight. Apparently this helps pilots handle the terrific G-forces the plane is capable of generating during maneuvers.

So as I am Googling through this stuff I find out that the the 174th Fighter Wing is losing its F-16s. They are being replaced with Reapers. What's a Reaper? An MQ-9, a.k.a. Predator "B", as in great big brother to the Predator drone. The Reaper is an unmanned aircraft with a wingspan wider than a regional passenger jet and the ability to stay aloft for over 40 hours while carrying hundreds of pounds of bombs and missiles.

The Reaper is worthy of a separate blog post, but the point that caught my eye about this huge shift for the New York Air National Guard is the effect on pilots. Out of 30 F-16 pilots with the 174th, only 20 are staying on to fly the robot planes. Which got me thinking. Maybe a shift to drones will help the commercial airlines, who are finding it hard to get experienced pilots.

I'm also wondering if the Reapers will be physically based in Syracuse, in which case I may see them on my next flight out of there. But being drones, I guess it's possible that they could be flying anywhere, while still being piloted from Syracuse. And that's what I call a trip.

(BTW, the pic in this post is from the web site of the Royal Netherlands Airforce F-16 DEMOTEAM, shot by P. van Uffelen © 55 jaar 313 Volkel 2008. The pic in the previous post was from the incredibly detailed Wikipedia entry about the F-16.)

On the Street Where I Was Born

Recently, on my technology blog, I wrote about the mixed reception that Google Street View has received in England, land of my birth. I admit to having mixed feelings about this technology myself.

It is very easy to be seduced by technology that enables me to sit in a cottage on a hill in the wilds of Upstate New York and capture this image of the street in England where I was born. (Just to clarify, I was not born in the street, but in one of the houses on this street--home birth by midwife being the normal practice in England in the 1950s.)

The most obvious change in the last 50 years is the number of cars on the street. There were  practically none when I was born. You could easily play 20 minutes of football in the road without being disturbed. Now there are too many vehicles, which is why many front gardens have been replaced with parking spaces--compare the original gardens on the left with the parking pads on the right. And so it goes...

The Cost of Suicide by F-16: Depends on who pays for the petrol?

As reported by the AP, a flight student who stole a plane in Canada was attempting "suicide by fighter jet." His attempt failed but I'm thinking how do you even try that?

Apparently the man "entered U.S. airspace and flew an erratic path over the Midwest with the military on his tail before he landed safely on a rural Missouri road, federal authorities said Tuesday." The article went on to say:
"Adam Dylan Leon, who was running out of fuel when he landed the plane Monday night in Ellsinore, Mo., was charged Tuesday with transportation of stolen property and illegal entry. The six-hour flight prompted a brief evacuation of the Wisconsin Capitol and warnings to commercial aircraft over Chicago and other cities, but terrorism is not believed to be a motive....The plane was intercepted by F-16 fighters from the Wisconsin National Guard after crossing into the state near the Michigan state line." -- Flight student charged with piloting plane into US
Ever wonder what an incident like that costs the government agencies that have to deal with it? Things like the fuel for those F-16s for example? Word on the street says the cost of jet fuel used in this incident was, wait for it: $800,000. Mr. Leon was apparently unhappy when he embarked on this journey. I think he's going to be even unhappier if they ask him to chip in for the gas.

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

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.

Diesels, The French, Chevaux and Cheveux, and Other Lovable Topics

I have to begin this post with some apologies. Two people commented on past posts and I didn't notice. I have only just approved their comments. Zut alors! I will change my comment settings.

So first there was a comment, signed by "A Frenchman" but under the blogger profile Christine, on my post about the Citröen 2CV. The comment pointed out that:
The name of the car is actually "Deux Cheveaux" which literally means "Two Horses" or 2 horse power. You have written "Deux Cheveux" which means "Two Hairs"!
This was a major typo on my part. I did know that the Deux Chevaux got its name from its 2 horse power motor, I just flunked French on that post. That's a pity because I like French, the language, and many other things French, like the smell of diesel in the morning while sipping a café crême and eating a croissant outside a French café (and yes, I do know why they are crescent-shaped).

I take some comfort in the fact that I am not the only person to make this mistake. There's a very nice Flickr photo of a 2CV labeled with my spelling. And Googling my spelling turned up this enjoyable NY Times article on the 2CV appropriately titled Plenty of Smiles Per Gallon. Of course, the picture in this post is NOT a 2CV but a more recent Citröen, the Xantia. This is similar to an earlier model my brother owned, the station wagon version of which had an enormous storage capacity and superb suspension that was able to lower the tailgate for loading and avoid the nose-in-the-air effect of carrying heavy cargo. Like most European cars it cruised smoothly and effortlessly at 100mph.

Which brings me to my second oversight, an unmoderated comment about diesels and their efficiency, from someone who runs his diesel Citröen Xantia on used vegetable oil. And apaprently this is even better for emissions than ultra low sulphur diesel. The person said: "It has an output of only .75% co2 against a figure of 2.5/3.00% published by the manufacturers...and I get MY fuel from the local takeaway!"

Anyone for cod and chips and a gallon of veggie oil? Ah, I love the smell of cooking oil while sipping a pint of Stella on the patio on a mild Spring evening!

The Wisdom of Villagers? Google Street View stirs protest in the UK

When villagers in Broughton, England, stepped into the road and linked arms last week to block the progress of a Google Street View camera car, were they also blocking progress? Or were they demonstrating that the wisdom of ordinary folk can sometimes exceed that of the brightest, or richest, techno-geek?

Why wouldn't the villagers of England welcome a technology that is proving very popular in its land of origin, America, the ability to enjoy a 360 degree view of city streets, from street level? Well, when a journalist asks for comment I always say: There are three main points to consider.

1. Geography. Streets and sidewalks in English cities are typically narrower than they are in America. That puts the Google camera car very close to your front door. Take a look at this first image, from a street in Leeds.

Drive down the left hand side of this street with a camera mounted on the roof of your car and you are just a few yards from the front doors you are snapping.

(I used to live a few streets over from this one when I was a student at the University of Leeds, and we had no front garden at all, just a door that opened onto the sidewalk or "pavement".)

The upshot of this domestic geography is shots like the second one, of a young lady pushing her baby through the front doorway of a house in Coventry. As you can see this Google Street View also contains a clear view of the neighbor's living room. (I don't think that's a flat screen TV that I see over the fireplace--but maybe a few doors down you might get lucky.) I think a lot of people on both sides of the Atlantic would consider that image intrusive.

2. Crime. The"mob" in Broughton cited a recent spate of burglaries as one of their reasons for objecting to Google Street View and Americans should note that a home in England is twice as likely to be broken into as an American home. Furthermore, 53% of English burglaries occur when someone is at home (versus 13% in America).

As someone who has experienced being woken up in the middle of the night and seeing a burglar in an English home, I can tell you it gets the pulse racing and leaves a lasting impression. While English criminals are less likely to carry guns than their American counter-parts, the aggressive use of knives is widespread in the UK and rates of violent crime [other than murder] are higher in the UK than in the US. (I don't like to just assert a number like that wihtout a primary source, but here is a secondary source--aspiring criminologists take note, there is fame to be gained by publishing a thorough comparison of US/UK crime stats.)

In the UK burglary "case" with which I am personally familiar, the burglar had acquired knowledge of how to defeat a particular type of lock and was going from house-to-house in the middle of the night looking for, and entering, those that were fitted with such locks. How much safer and efficient, to do your research online, from the comfort of your sofa, using Street View?

3. Rights. In the comments of some Broughton residents I got a whiff of unease that has been brewing for some time, a sense that we, the people, are tired of corporations profiting from our existence. A bunch of companies, from credit reporting agencies to data aggregators, make their money off the fact that we exist. They sell information about me. And now one of the richest companies in the world is enhancing its profits with a snapshot of my house while big companies, Sears for example, charge you for using photographs of their "house." I sense the common man, and woman, is getting a little tired of this state of affairs. It doesn't feel quite right, even though it is hard to say exactly what is wrong with it.

So there you have the three points. And, as I would say to the interviewer, let me conclude by observing: The error often lies not in the act but in the reaction. Google's reaction was to say, in effect, "What's the big deal? It's easy for people to remove images." Oh yes, like the lady with the baby is going to be checking the status of her online identity every few weeks to see who's snapping her. I am reminded of the response companies used to give in the early days of spam, before spam became both imprudent and illegal: "What's the fuss? There's an easy way for consumers to get off the mailing list." The wisdom of folk suggests that Google has some serious work ahead if it is to avoid the emergence of a "Do not photo" list. Otherwise, Broughton may become a rallying cry for a whole lot more trouble to come.

I leave you with a question. What the heck is that plant growing in the living room of number 185?

Well That Was Fun: Monetate launches Smellr

There are many things I enjoy about working for Monetate and they all came together today: Cool technology, brilliant developers, cutting-edge digital artistry, crafty copy-writing, savvy leadership, and great camaraderie. All of this orchestrated in a concerted team effort to execute a good idea with skill, excellence, and a good laugh.

And we succeeded!

The web site Smellr got over 14,000 visitors. The Monetate Post-click Marketing Blog and the main Monetate web site both received at least 20 times the normal amount of traffic. We've been mentioned in the Associated Press, The Guardian, and many blogs, including blogs.com and the bostonist. We were even seen on CNN in the Netherlands!

I know some people get tired of April Fool's jokes, but I think one reason they still persist is that many people feel the need for a good laugh about this time of year. You've struggled through the Winter and it's still struggling to hold back Spring. The nights are getting longer but the skies are still too grey. It's time to take things a little less than seriously for a day.

Happy April First!