Archive for the author ·

Lockjaw

·...

Alopecia Areata: Curing an Incurable Disease

4 comments

Alopecia Areata has been a great mystery for many years. That is changing quickly. A disease that struck my sister nearly two decades ago, struck me just six years back. The difference in knowledge about this so-called incurable disease between those times is huge. The knowledge we’ve gained in just the last few years is, I believe, allowing me to cure myself.

before

When I set out on my quest for a cure, it was for my sister. Not me. I was blessed with a glorious head of hair. I love a good challenge, but the entire body of knowledge on the subject seemed to be summed up with “caused by stress.” Stress? That makes no sense. Stress is a great catch-call answer for a variety of medical symptoms. I just don’t buy it.

There were then, as there are now, plenty of quack remedies, specialist treatments, and scams aimed at sufferers of alopecia areata. They may not have been effective in curing the disease, but they did a great job of taking money from one pocket and moving it to another.

201207

Move forward a few years to the onset of my own symptoms and things are much the same. Soon information began to appear that changed everything we know about this disease. Some fantastic work has been taking place in the field of medical science in multiple areas.

The first information that gave me hope for a cure was the inclusion of Alopecia Areata on a list of 11 linked autoimmune diseases. This list included rheumatoid arthritis, celiac, vitiligo, and psoriasis right along with alopecia areata. Rheumatoid arthritis caught my immediate notice, as I was diagnosed with this disease in 9th grade.  Celiac kept nagging at me from the list as I researched the meaning of autoimmune disorders.

An autoimmune disorder is, basically, when your body’s immune system begins attacking the body itself. Think of it as an allergy to yourself.  Alopecia areata is like having a hair allergy, in a way, or at least that was what I thought. Celiac kept nagging at me from that list, though.

So, what causes autoimmune diseases? Mostly, nobody knew. The thoughts tended to fall into three categories.  These were, environmental factors, dietary factors, and other. Celiac nags at me from the list.

By this time, my own hair loss had progressed from being unable to grow meaningful facial hair to actual major loss on my scalp. Large swaths of hair were falling out. Eventually it all fell out, though sporadic regrowth in spots meant I never achieved a fully bald look.  No.  That would have been something positive.  At no point in the process did I have a head of hair that looked “good.”

201305a201305b201305c

I called it my service to balding men, to know that someone has a worse hairline than them.

Since celiac kept nagging at me, I researched it a bit.  I researched other diseases on the list. Celiac stood out, though, from the rest. Out of 11 autoimmune diseases that have been linked to each other through human genetics, celiac was the one that actually had a known cause. Gluten causes celiac. Celiac is linked to alopecia aerata. Nobody knows what causes alopecia areata. Autoimmune diseases are thought to be caused by environmental or dietary factors (or “other”).

I decided to go gluten-free as a first step in curing my alopecia areata.

“You’re not going to grow your hair back by going gluten-free.”

My wife was skeptical, but supportive.  She knows how much research I’d put into this subject. She saw a major dietary change that could be a challenge. Most everyone else I’ve explained my decision has been much more skeptical. They’ll politely nod and smile at the idiot. I think my Mother doubted that I could stick to a diet change even more than she doubted my hypothesis. My doctor said, in no uncertain terms, “You’re not going to grow your hair back by going gluten-free.”

Information about alopecia areata is flowing in more freely now, because I’d expanded its definition to include autoimmune diseases. My research had begun to pay off more due to this link, and in medical science the same was proving true.

201311a201311b

It is at this point I would like to point out the wonderful work of Dr. Angela Christiano and others at Columbia University. Dr. Christiano is a research scientist who specializes in alopecia areata because she has alopecia areata. Much of the science I refer to here is hers in great part. She is far from the only doctor working on the subject, but she is pushing what we know further.

Dr. Christiano and her team recently released a study explaining what is happening when alopecia areata occurs. In our blood, we have cells called cytotoxic T lymphocytes. These are the immune system cells that attack invading bodies, infections, and even cancers. In alopecia areata, they attack the hair follicle.

What happens when they attack the hair follicle I know more from my own close examination of my hair loss and regrowth. The follicle isn’t lost, necessarily, though I am sure it may be in extreme cases. The follicle is leached of much of its “goodness,” leaving behind a thin, transparently white, weak shell of a hair shaft. Without the strength necessary to hold itself up, most of these thin hairs simply break off at the surface.  The few that remain are the strongest of the bunch, but they’re still thin, transparent-white shells of what they should be.

You can see this on regrowth, more than when they are falling out.  On regrowth, the white hairs will thicken and grow.  They will slowly transform in color over the course of a month or two.  That’s one-quarter to one half of an inch, by the way. Once the transformation to normality is complete, the hair will grow normally once again.

Regrowth is a wonderful thing. I’ve been able to enjoy it more in the last few weeks than I have before.  Why?  It’s very simple. My hair is growing back. The spots aren’t where it’s fallen out, but where it hasn’t yet filled in.

201501

It’s not just about going gluten-free.  In fact, I changed my diet further.  I’ve also gone dairy-free. I believe doing so has greatly sped-up the process of curing my alopecia areata. Both gluten and dairy are on the list of foods that may cause autoimmune disorders.  The list is longer, but I don’t believe I need to continue further down it in my dietary choices.

I am not a doctor. You shouldn’t be taking medical advice from me. You shouldn’t be looking at some of the stupid things I do in life as a guideline for your own. With that said, I truly believe that I have achieved a cure of my alopecia areata through dietary change. I also believe this can be repeated.

What should you do?

  • Do some research for yourself.
  • See your doctor. An autoimmune specialist would be a good idea.
  • Understand the dietary changes you’re considering

I chose to go gluten and dairy free. I am now nearing full regrowth after losing every hair on my head, my facial hair, and my eyebrows. I chose gluten and dairy because of the odds. Approximately 1/3 of humanity is genetically intolerant of gluten to some extent. Cassein, a protein in some milk (most American milk) is chemically very similar to gluten, and known to cause issues in those intolerant.  Because I’m seeing positive results which include hair regrowth, I don’t feel the need to add other foods to my restrictions list.

201505

I’m writing this blog post to explain my process, my thoughts, and my success in fighting a winning battle against alopecia areata.  It doesn’t leave me with a product to sell. It just leaves me with a story. As long as it leaves me with hair, I’m happy.

The picture you see above is my latest. You can’t tell, but the empty gaps are in the process of transforming into good hair. In a few weeks, or perhaps months, I plan on getting a fine haircut.

There’s nothing to sell.  There’s no lotion to apply.  There’s no pill to take. There is, however, hope.

I’m not selling hope, but if you would be willing to buy a book for the above information, perhaps you’d like to tip the author a bit to help pay for those gluten-free meals.

Bitcoin:1JtfKPYgXHzR4phtLHpji2nyZdsFHMhyLd
Dogecoin:D5NSD4vCSz5xALpugauoegd77wRWAKvPWu

 

Dogs Chilling in the Park

no comments
These three dogs were chilling in the park near the Cloisters one day.

These three dogs were chilling in the park near the Cloisters one day.

Washington Square Park Dancer 2

no comments
Dancers in the Park

Dancers in the Park

Washington Square Park Musician

no comments
Musicians in Washington Square Park

Musicians in Washington Square Park

Dancers in Washington Square Park

no comments
Dancers in the Park

Dancers in the Park

Post-Sandy Photos from Upper Manhattan

no comments

Trees down, some damage, evidence of the high-water mark by the river, and the George Washington Bridge devoid of cars.

Lunchtime in New York Before Hurricane Sandy Rolls In

no comments

The Buffy Project is Over. I Tried

no comments

I tried. I really did. My plan was to watch, and blog about watching, the entire series of “Buffy the Vampire Slayer.” Unfortunately, the process of blogging it was the most interesting part of the process. Watching the actual show was pretty darned boring.

No offense meant if you’re a fan. Me? I’m not. At least this means I don’t need to watch “Angel” too.

What’s Wrong With Facebook (and TimeLine Ain’t It)

no comments

Once upon a time there was a website called MySpace. Myspace was popular, and got invited to all the parties. You never knew what MySpace would show up wearing, but it was usually something crazy and flash, designed to make it stand out. MySpace also had a habit of getting drunk and taking over the music, randomly switching from genre to genre, and from today’s hits to that one song that sounds like someone took a chainsaw to a sick horse. Sure, MySpace was fun to have around, but after the party the whole place seemed to have been redecorated. Why is the paint on the back wall flashing again?

The bottom line is, MySpace became so annoying that its users started to hate it, and Facebook came along to save the day.  MySpace is still out there, and nobody cares.

Facebook learned a lot from the MySpace failure. They locked down the design to keep the feel of the site uniform from space to space. They offered more features, while paying close attention to MySpace’s annoyances for what to avoid.  It was easy.  MySpace was on top, and Facebook positioned itself as the “better” version.  It was true.  Facebook was the best full-featured social media service. This is no longer true.

Sure, Facebook is the biggest. When you’re the biggest, you can do what you want. This, at its root, is what’s wrong with Facebook. With the largest user-base, no real competition, and plenty of money to invest, Facebook can move quickly to implement new features and strategies. Ideas can be designs, which can become tests, which can then become finished code in a short timeframe, and with that ability the features backlog starts to grow.

This is how TimeLine comes into being. Someone decided that the individual users’ pages on Facebook needed improvement. Ideas were tossed around.  How do you put more content on the visible page, yet keep a good flow? Someone had the idea of drawing a timeline, and then pointing each post at its spot on the timeline.  Users will still have a visual cue, but they can go left and right to read all the content.  It’s BRILLIANT!

The problem is, it is not brilliant. Timeline forces a bad workflow on the reader. It clutters the design of the page.  It makes it harder to find information you need, when you’re visiting someone else’s page.  What’s worse, it makes it MUCH harder to follow the flow of a person’s output through time, which is exactly the problem Timeline is supposed to solve.

It’s not just Timeline, though. The main page sort defaults to an “important people first” methodology, which always puts my Mother-In-Law in my first-read position. There’s a little “sort” link attached to the “write something” box, which apparently doesn’t affect the “write something” box at all but sorts the content below it either in “important people first” or “in order by time) which is the proper way.  Of course, it defaults to the wrong way.

It’s easy enough to change the sort, once you’ve discovered it Be careful, though.  There’s a little “down arrow” beside the sort that looks like a sort button. It’s lined up just right at the top of the  column.  That’s actually a post-specific options menu. Most designers put something like this along with the other actions for that object, but Facebook’s UI people decided that intuitive just wasn’t good enough this time.

Aside from changing it every time you visit the site (it is at least sticky within that session, or until I close my browser) there are two options you have.  One is to train it, and the other is to go into your settings and change the default sort.  Try as I might, I couldn’t find an option to set the default sort. It’s a stupid feature to force on your users, but if that’s the game they want to play I’ll just start training the algorithm.

I spent weeks telling Facebook that my Mother-In-Law wasn’t important enough to be at the top of my feed.  Nothing personal against my Mother-In-Law, but there are really only three people I care to see at the top.  My wife, my son, and my Mother are the only three people I care to see out of series.

That sweet lady who worked a few seats from me at an old job?  Not that important. The high-school friends that I haven’t seen in years?  They don’t go to the top. My best friends don’t go to the top. Every time I saw the wrong person sorted to the top, I’d use the little menu to try to tell Facebook that they aren’t THAT important.  Facebook isn’t a very good learner, though.  It never worked.

Let me repeat that one more time.

FACEBOOK IS NOT A VERY GOOD LEARNER.

Facebook keeps making features that de-hance the user experience of the site.  The site has grown more cluttered, more ugly, and more confusing as time has passed.  Controversial features are revealed, reviled, avoided, accidentally turned on, complained about, and finally forced on the users that have worked so hard to keep it at bay. They take weeks, or months to go through the process of taking a feature from “announced” to “forced on the users.” Don’t you worry, though, Facebook friends, that feature will be forced on you one day.

How could this be fixed?

Facebook needs some “No Men.”  Something tells me that “No” isn’t something that goes over well at Facebook.  This could have something to do with the recent exodus of major developers from the site. Either the UI Design Team(s) do as they are told and make the best of bad ideas, or they’re hiring some bad talent.  Something tells me that feature requests come from the executive level, and the UI teams do what they can to fit the ideas into the site.

Did someone sit in a meeting and say, “Timeline is a bad idea that will make navigation harder, comprehension harder still, destroys workflow, breaks the design of the overall site, and totally piss off a major percentage of our user-base?” Did anyone care if they did?

What’s wrong with Facebook isn’t Timeline, or sorting, or lack of configurability, security concerns, the hiding of the personal options menu, or any of the other niggling little things that drive its users crazy.  The problem with Facebook is that it doesn’t care what the users think or want. It’s a common thing in software development.  It usually comes from the top, and it is usually up to the ones with the skills to make up for the bad executive decisions such as Timeline.

I like Facebook well enough. I like being able to stay in touch with family and friends, especially now that I’m living in New York City. Facebook gives me a way to share my life in my new city with my family back home. Because Facebook has had so many bad features forced on me, it takes longer for me to get started and handle my social business. In order to use Facebook the way I want, I have to spend more time on the site doing non-useful things.  Instead, I spend MUCH less time on the site.

Let me make that much clearer, just-in-case Mark Zuckerberg reads this. I spend FAR less time on Facebook these days.  The primary reason for this is that new features are making it harder for me to “facebook.” Between bad sorting (first fix each session), slow scripts, auto-refreshing while I’m reading down-page, the inability to block content re-shared from groups, the silly right-side trying to get me to use yet another stupid feature (best friends now?  Really?  Don’t we have friend grouping for that?), and the inability to change much of anything to improve personal workflow, I’ve started actively disliking the site. It’s not Facebook I despise.  It’s the Facebook website I despise.

So, Facebook, want to learn how to fix all this?  Want to know what you can do to make your users like you again?

How about, for once, giving a damn what they think?

Edit: Here is a great article about someone that’s decided to quit Facebook, and why. It’s a familiar pattern.

The Buffy Project: Two Bad Seasons Down but Things Are Looking Up

no comments

No, I haven’t forgotten about the Buffy Project. The quest continues to watch the entire “Buffy the Vampire Slayer” TV show from start to finish, and blog the experience. I knew that it was a bad idea going in.  No, not a bad idea to watch the show.  The bad idea was to start at the beginning.

If you’ve read my previous Buffy Project posts, you know that the show has been meeting my rather low expectations. Now that I’ve finished season two, not much has changed.  It’s not a bad show, mind you. It’s just that they’re seasons one and two.

The second season came in fits.  I’d watch an episode or two, and then none for a while. Since starting season two I’ve watched the entire Netflix runs of Breaking Bad, Sons of Anarchy, Black Books, Spaced, Archer, and Bob’s Burgers. I’ve watched parts of the original Star Trek, Nikita, Top Gear, Doctor Who, Psych, Greg the Bunny, The Good Guys, and Darker than Black. I’ve read all three Hunger Games novels, the Harry Potter series (and the movies), one James Patterson, a Terry Pratchet, and Andrew Breitbart’s excellent, but last book. I’m currently working my way through Cryptonomicon. You might say that I’ve done everything but the Buffy Project.

I buckled down again lately, and started catching an episode or two at a time again. I began to dread the end of the season, because that would mean the end of procrastination.  How do you blog about watching a show which isn’t good enough to love, but isn’t bad enough to abandon once blog-honor is on the line?

Luckily, the final two-parter happened.  Everything gets twisted.  She admits to her Mom that she’s a Vampire-slayer. One friend (albeit a short-lived one) dies, another kidnapped, and the third hurt. At the end it’s Buffy, teamed with her worst enemy in a fight to defeat her boyfriend.

I realized why I haven’t been able to enjoy the show, as I watched the last episode of the season. At no point have I felt emotionally invested in the characters.  They’ve grown.  Interesting things have happened.  Still, though, these people on my screen are just characters.  No big deal.

At the end of season two, however, that’s starting to change.  I’m starting to get a connection with the characters. This is a good thing, because I’ve believed all along that season three is where the show really starts. I won’t repeat the theory here as it is not unique, terribly insightful, nor short.  See previous posts.

Next up?  Season three.  If it lives up to expectations, I don’t expect to wait until the end of the season to post.

Thoughts?

%d bloggers like this: