Science Ain't So Bad » Deafness

MYSTIFYING CASE OF CHLOE SOHL

MISTER Science Ain't So Bad — Thu, 09 Jun 2011 22:00:54 +0000

STICK A STEM CELL IN IT

FIRST DEAFNESS CURE WITH STEM CELLS?

Chloe Sohl was a happy kid, hanging with friends, worrying about her looks, and trying to stay awake in stupid math class, when something really, really, surprising happened to her.

She went deaf.

Is there a good time to go deaf?

If it happens at the EXACT second when the kid who’s thumpin’ your seat back starts screaming? Yeah. That’s OK.

Long as you get yer hearing back after you land.

But forever? And in high school when you, seriously, NEED to jabber all day and all night with other kids to keep SANE? And be hooked up to music when, THEORETICALLY, you should be studying? Ugh!

SOCIAL ISOLATION. CONFUSION AND MISERY.

Chloe wasn’t completely deaf yet but it was bad and getting worse. Hearing aids helped a little. Maybe drugs would slow things down. Eventually, though, Chloe’s ears were over.

Some say deafness isn’t bad. Kinda cool, actually. Maybe you’ve seen young people talking in sign. Their fingers dance, their eyes gleam, and their faces are animated. It’s amazing and it is beautiful to watch. This isn’t a disability, it’s a gift. Cochlear implants are for slugs.

But Chloe wasn’t trying to make a political statement. She just wanted her life back.

A CHANCE

Her folks (both doctors) explored all the “safe” possibilities and came up dry. Should they go the edge? Should they gamble or should they accept a life of silence for their daughter? They had heard about a Korean company, RNL Bio, that offers stem cell cures. After talking to the docs there, they decided to take a chance.

“ We only did it, once we were convinced it would be safe for our daughter to have this treatment. Among the things that were reassuring about the treatment were the fact that the cells are coming from her own body .. That decreases, a great deal, chances of a mishap,“ says her dad. (Video below.)

WHAT HAPPENED NEXT

Chloe became a “medical tourist”. After sending off some tissue samples to RNL Bio, she traveled to Japan where stem cells were infused into her body. MISTER ScienceAintSoBad doesn’t know what she was thinking when they hooked her to the IV; HE would have been thinking “Time to kiss my butt goodbye”.

Luckily, nothing terrible happened to Chloe. She returned to the U. S. and, eventually, got back all the hearing in one ear and most in the other. She could hear again. The first American – the first earthling, as far as we know – to have been thus “cured” of deafness by stem cells.

ISN’T THIS A LITTLE TOO PAT?

ISN’T THIS KINDA CRAZY AND IRRESPONSIBLE?

AND WHAT’S WITH THE QUOTES AROUND CURED?

Uh. Yeah, yeah, and I’ll put quotes anywhere I want to. My blog.

Here’s the thing.

Stefan Heller (Stanford University School of Medicine) knows about hearing loss. He’s a revered pioneer in this field. His remarks to MISTER ScienceAintSoBad were short and clear. He isn’t a fan of this kind of thing.

We’ll leave it at that.

Research into hearing loss is going great guns, but it’ll be a long time till you see cures announced. The researchers are careful. They don’t want to risk hurting as many people as they help. Or taking money under false pretexts.

The burden is heavy. It’s how we do science.

Dull, huh?

So what do these magicians at RNL Bio know that the rest of the world doesn’t?

Maybe it’s WHO they know. According to an article in Korea Times (November 15, 2010), the company gave breaks to lawmakers in return for favors. An investigation was launched into its practices this year.

Also:

It clones dogs.

It sell cosmetics (stem cell based).

A couple of patients died. Not saying it’s their fault. You gotta worry a LITTLE though, right?

And its success stories, like the carefully prepared video on YouTube that’s posted below, are more often touted in unchallenged venues then in professional forums.

ARE RNL BIO’S ETHICAL PRACTICES POOR?

Medical experiments on human beings is kinda complicated territory. We let cancer patients do “trials”, for example. Usually, this is a last resort. But, still, however tightly controlled, these are experiments (with strict protocols). Unlike most research facilities, institutions that cater to “medical tourism” aren’t under that much scrutiny. Their published studies and follow-ups are a little sparse. As far as hearing loss goes, we haven’t heard of any other successful stem cell cures like this one in a human.

Was Chloe Stohl just lucky? Was it the other drug that was in her system at the same time? Was it a rare case of spontaneous recovery unrelated to the stem cell infusion? Why isn’t her current health status public? Were we all tricked, somehow? Was it a made up story?

This blog’s detective agency is busy with Congressman Wiener, right now. No time to figure what’s behind the curtain in the Sohl case. Probably we’ll never know.

How do we rate this one?

ScienceAintSoBadRating for a good yarn = 10

ScienceAintSoBadRating for good science? Uh… Jury? Hey. Where’s the jury? Are they still out?

Video Of Chloe Sohl

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Credit for the image of an ear (has nothing to do with stem cells, by the way):
This work is licensed under a Creative Commons Attribution-NonCommercial 2.0 Generic License.

Financial Aid For Hearing Aids (and don’t YELL at me!)

MISTER Science Ain't So Bad — Fri, 12 Feb 2010 16:29:55 +0000

DEAF BEATS POOR

Hearing Aid Help

You’re right.

Science Ain’t So Bad is a blog about science. And technology. And where you find the bucks to pay for hearing aids isn’t the big research issue of the century.

But I’m the writer guy and I get to decide. And DAMN this is a good thing to tell people about. So don’t yell at me.

I got my rights!

So, as I was saying, a VERY non-scientific and technical matter of GREAT interest to those of you who wear or need hearing aids is how do you pay for the durn things. The good ones are expensive as hell and, mostly, they’re not covered by your health plan.

The Better Hearing Institute has published a comprehensive “Guide To Financial Assistance for Hearing Aids“. And MISTER ScienceAintSoBad thinks that is mighty cool!

Even if it DOES leave you unfulfilled about the latest results from the Large Hadron Particle Collider.

ScienceAintSoBadRating = 10 and no apologies for it.

BREAKTHROUGH ON BOMB DETECTION

MISTER Science Ain't So Bad — Sun, 12 Jul 2009 18:27:00 +0000

Photography by Tela Chhe under a creative Commons License

SurveilanceTechnology: DETECTING SUICIDE BOMBERS

If I ever start a “Politics Ain’t So Bad” blog (Don’t count on THAT!), I’ll go into more detail, but it doesn’t take a political genius to figure out that suicide bombing’s a bad thing. It’s also a frustrating thing because it’s so hard to defeat.

I know it sounds strange, but some undergaduates at the University of Michigan have, supposedly, created a cheap array of sensors that can identify suicide bombers remotely. With more testing, maybe it can be commercialized and sold to the Pentagon at ridiculously inflated prices.

SubstanceAbuse: MODERATE DRINKING

If you’re on a quest for eternal truth, you can skip the scientific journals in which yesterday’s orthodoxy is today’s trash. Established scientific verities like Newton’s laws, are never safe. So, although the idea that moderate drinking is good has had a long run, that “well established” fact is being shot down by a sociologist at the University of California.

But please don’t sober up on my account. Even a casual review of the literature reveals an impressive array of apparent benefits to be had from a LIMITED amount of imbibing.

Besides. You think tea’s safe?

Cancer: VERY HOT BEVERAGES

Tea. Let it brew please. If hot tea can damage your throat, what about other liquids such as coffee or soup?

OnlineSystems: IMAGINATION CENTRAL

The housing crisis came out of nowhere.

Some crises , like 9/11 and Katrina, just can’t be predicted. Or so claim those responsible. But, you know what? Every single one of these crises WERE foreseen. By someone.

A novel was written about airliners being used as weapons. And editorials were written about the potential for disaster that lay hidden in the levies of New Orleans.

But the foreseeing was over here and the policy making was over there.

No connection.

Science Ain’t So Bad wonders if there’s a way to link up our private prophets with our public authorities?

Could ideas be solicited online? Cash for crash? Could a system be developed for determining the most accurate prediction of a disaster? Maybe, also, a way to call this to the attention of those who can do something about it? Perhaps it could have a board of ombudsmen, each with strong professional ties to particular sectors. How this would work, exactly, I do not know. But I bet there’s a way to do this and I would welcome your thoughts.

Medical Technology: SURVIVING THE HOSPITAL

I’ve talked about Sepsis before. It’s a very dangerous immune cascade triggered by an infection. Docs need to be quick and lucky-as-crap to avoid losing a patient.

This, from Vanderbilt University University Medical Center could be very important in managing these cases.

Information Technology: GOOGLE CHROME (MORE)

I’ve been discussing Google’s plans for Chrome with Alan Wild, a very knowledgeable IT professional (and friend) in Rhode Island, and a great supporter of this blog. He suggested that I include in this post a recent email.

Me (to Alan):

From more reading, I think I figured out where Google is going with Chrome and it is interesting.

The idea (as I understand it) is this. Google hopes to do something really radical. There’s a lot of talk about computing being done “in the cloud” (on the Internet) instead of on the desktop. And Google already has a lot of apps that are out there which, I suppose, it is now going to bulk up. Its Google Docs might emerge as a full fledged equivalent of MS Office. And so forth.

So I think Google’s idea is to limit the computer to being, mostly, a host for a browser (though it would be able to control peripherals such as printers, CDs, etc.). Pretty much ALL your applications and your data would live “in the cloud”. Obviously, this does move the security issues “out there” too which means that it that it would be pointless to attack your computer with viruses and spyware and it greatly reduces the need for you to buy a powerful and expensive computer.

Before Google can sell this idea, it has to show that its “out there” security can be better than security on your own system. It must have some hot ideas that it plans to announce on that front.

ADDED AFTER-THE-FACT

Incidentally, there seems to be some confusion between Android, Googles new operating system for smartphones, and Chrome, its declared-but-not-yet-seen operating system for netbooks, etc.

If I’m right, users of Chrome, will find themselves working on documents “in the cloud”. This if fine for a user who is on a conventional computer or even a wifi-connected box. But, if the user is connect via a cell phone which includes charges for data when you’re working on the WEB, he/she might not be happy about the “cloud solution”.

Android may well offer a different focus then Chrome and it probably should.

Edging Toward A Cure For Hearing Loss And Deafness

MISTER Science Ain't So Bad — Thu, 07 May 2009 19:28:00 +0000

Photo of me by me.

“I hope that in five years, we are at a point that we can say that it is possible to cure deafness, at least in an animal.” Dr. Stefan heller. August 7, 2006

Stick your fingers in your ears. Both of them. Can you hear your cell phone ring? Is the guy on CNBC saying “vrumph, vrumph, vrumph?”

It’s called “hearing loss”.

I’ve had “fingers stuck in my ears” for years. And there are invisible fingers lusting for your ears too. About 10% of the population has hearing problems. If you stick around long enough, it’ll probably happen to you. More than half of “seniors” are affected by this annoying and, often, disabling thing.

HAIR CELLS AND HEARING

If the gills of our swimming ancestors hadn’t evolved into the ears of homo sapiens, we wouldn’t have developed speech. No point in talking if you can’t hear the words. And, without speech, we humans could still stand up straight and could still throw rocks. But it wouldn’t be quite the same, would it? So imagine how disappointing it is to discover that our wonderful and much taken for granted ears wear out! In fact, they are SO delicate! A good thumping beat at a high volume slowly and inexorably grinds up our gears. It’s like your mother said, “Turn down the damn VOLUME before we BOTH go deaf!”

You may remember from biology class, that the ear has a cochlea that looks like the spirals of a sea shell. Inside this cochlea are hair cells (“stereocillia”) on a membrane. They’re made of actin, the same stuff that makes mucles flex. When sound waves wash over the hair cells, they’re bent back and forth, converting mechanical motion into electrical signals for the nervous system.

This structure, the cochlea, tantalizes researchers. Obviously, this is where the action is. But, because of its location in the body, it’s hard to study. The size of the hair cells, a few hundredths of a millimeter in width, doesn’t help much either. But it is these delicate cells that are complicit in the most common type of deafness: age-related hearing loss (presbycusis). Once damaged, they’re gone forever. It’s this sad fact that explains why most of us adults are slowly, slowly losing our high frequency hearing. Or worse.

Image is from 29th edition, Gray’s Anatomy via Wikipedia Commons and, ultimately, from Wikipedia article on the inner ear.

FIXING THE PROBLEM

In the modern era, some hearing problems can be addressed with surgery or by removing impacted ear wax. Leaches, ear candling, aldosteron, B12, folic acid, and hypnosis are all in there somewhere too. But there doesn’t seem to be much you can do about the slow drip-drip-drip of age-related hearing loss except go find yourself a hearing aid (see rant below).

HOWEVER, in the 1980′s, it was discovered that hair cells in the ears of birds DO regenerate. Sensational news!

As the scientific world discovered the potential of stem cells which can differentiate into all kinds of things, researchers, such as Stefan Heller of Stanford University, began to look for connections. In 2002, Dr. Heller, then at Harvard, discovered that stem cells are present in the inner ear of human beings, suggesting that there’s a latent potential for regeneration of hair cells. One of his goals is to develop a drug that can be introduced into the ear as an ear drop.

I don’t mind admitting that he’s one of my heroes. In this video, he describes what he’s up to.

THE AUDACITY OF HOPE

Headlines can be heartbreakers. I like science. Why ELSE would I write about it? But headlines like Cell Transplants May Cure Deafness and Cultivated Ear Cells May Lead To Cure For Deafness raise hopes only to crush them again under the cruel heel of “maybe” and “someday”. These breakthroughs ARE important steps and MAY lead to a cure. But, not to be cynical, they’re more likely to lead to another round of grants for the lab. I guess that’s a TERRIBLE way to introduce this section because there IS a lot of great science being done:

The role of neurotrophins, chemicals that bathe the auditory nerve, is being worked out by Robin Davis, Professor of Cell Biology and Neuroscience, Rutgers.

Dr. Karen Avraham, Department of Human Molecular Genetics, Sackler School of Medicine, Tel Aviv University, has shown that “microRNAs” can be responsible for hair cell death. Link. If I understand this right, it’s an exciting insight for people who’s hearing starts to go at a younger age. The therapy would involved inserting microRNAs directly. Science now. Medicine later. Maybe.

Hair cells are kept “tuned up” by certain proteins. Knowing how this happens seems to be another important step in understanding what can go wrong. Very interesting and very basic.

Helge Rask-Anderson, Professor of Experimental Otology, Uppsala University, is studying growth of stem cells and trying to find ways to coax them into the right places with electromagnetic fields. Cool!

Marcelo Rivolta of the University of Sheffield is working with human ear cells created in the lab with foetal cells.

Work in Itay with stem cells from human umbilical cored blood. Link.

HEARING AIDS – A RANT

What’s wrong with hearing aids? Don’t get me started!

WHAT a disconnect between the wearer, often elderly or very young, and a device which is easily damaged and high maintenance! Good ones are expensive, rarely covered by medical plans, and are often uncomfortable. And you gotta be SO good to use these things right. Choosing the right one, inserting it right, maintaining it, keeping it free of wax and knowing what to do under which conditions, dealing with telecoils and various “program settings”, manipulating tiny controls in crazy places. This is hard stuff. And I’m a Biomedical Engineer! No wonder so many hearing aid users give up.

Knowing when they’re on the fritz and need a trip to the audiologist might SEEM like the easy part. But it isn’t. The changes in hearing may be gradual and hearing isn’t as obvious as sight. Maybe your spouse is mumbling.And getting caught in the rain or forgetting to remove them before showering can destroy an investment of thousands of dollars.

Even IF your’re really good at all this stuff, hearing aids just don’t bring you all the way back. Not even the best of them. It ain’t like the old days. The High Fi’s gone.

But they help. And I don’t mean to be ungracious.