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Heroes

Dying 'butterfly child' saved thanks to a radical skin replacement.

Doctors saved the life of a dying boy by replacing 80% of his skin with a last-chance experimental gene therapy.

Not only did he survive, but thanks to the therapy, the boy may even be free of the effects of the devastating genetic condition that nearly killed him.

In June 2015, a 7-year-old boy named Hassan arrived in the burn unit of a German children's hospital.

Hassan was gravely ill, close to dying. More than half of the skin on his body was gone. But though he was in the burn unit, these wounds weren't burns.


Hassan was born in Syria with a devastating and often deadly genetic condition called junctional epidermolysis bullosa, or JEB.

Epidermolysis bullosa is the result of a mutation in a person's genes and makes a person's skin fragile. Kids with the condition are sometimes called "butterfly children" because their skin is said to be as fragile as a butterfly's wings. Even the slightest touch can lead to wounds or blisters — and that's on a good day.

An out-of-control skin infection linked to his condition had landed Hassan in the hospital in the worst shape of his life. Only the skin on Hassan's head and a small portion of one leg remained intact and untouched.

"He was in severe pain and asking a lot of questions," Hassan's father said, as reported by the AP. "'Why do I suffer from this disease? Why do I have to live this life? All children can run around and play, why am I not allowed to play soccer?' I couldn’t answer these questions."

The German doctors tried to give Hassan a skin graft from his father, but it didn't take. The pain ended up being so bad that Hassan needed to be placed in a medically-induced coma. Desperate, and out of conventional options, the Germans called up Dr. Michele de Luca, a specialist from the University of Moderna who specialized in regenerative medicine.

"We were forced to do something dramatic because this kid was dying," de Luca said.

It was time to experiment. De Luca figured, if a faulty gene in the boy's skin was a problem, to heck with it. Why not just grow him new skin from scratch?

A sheet that could contain the tweaked skin cells. Photo from CMR Unimore/Nature.

Our skin naturally replaces itself about once a month thanks to regenerative stem cells deep inside it. If de Luca could fix the faulty gene in just these cells in particular, eventually all of Hassan's skin would contain the new, fixed gene.

De Luca removed a patch of the boy's undamaged skin and, through genetic editing, was able to find some of these cells, insert a working copy of the suspect gene, and then grow the cells into large sheets, which were then grafted onto Hassan's body.

This technique had been attempted before but was still experimental and only on a very small area of skin. By the time de Luca and his team were done, their new, healthy skin would end up covering about 80% of the boy's body.

Going this far was unprecedented. As to whether it would work, once the grafts were in place, all the doctors and Hassan's parents could do was wait.

The risk paid off. "This kid is back to his normal life again," said Dr. Tobias Rothoeft, one of the German doctors.

Photo from Ruhr University Bochum.

In the two years since the operation, Hassan has gone back to school and is even playing sports. He doesn't need medication, and if he does get a cut, his skin heals up just fine.

"That’s what we dreamed of doing and it was possible," Rothoeft said.

The boy will still need to be monitored for any potential complications. But for now, things seem good. And an amazing amount of progress on a condition that many thought incurable.

Genetic conditions can be cruel. There are a lot of people, kids and adults alike, who have to live with painful or debilitating conditions, like cystic fibrosis or sickle cell anemia. And we are a long way from being able to help with many of them — the researchers note that this even this therapy might not necessarily work for everyone with this boy's condition.

But this does represent a big, striking win for the field of regenerative medicine. The science is still young and there are many hurdles yet to overcome. But when it works, well, there is at least one set of parents who can attest to how powerful it can be.

The boy's case, and his treatment, were published on Nov. 9 in the journal Nature.

Pop Culture

Airbnb host finds unexpected benefits from not charging guests a cleaning fee

Host Rachel Boice went for a more "honest" approach with her listings—and saw major perks because of it.

@rachelrboice/TikTok

Many frustrated Airbnb customers have complained that the separate cleaning fee is a nuisance.

Airbnb defines its notorious cleaning fee as a “one-time charge” set by the host that helps them arrange anything from carpet shampoo to replenishing supplies to hiring an outside cleaning service—all in the name of ensuring guests have a “clean and tidy space.”

But as many frustrated Airbnb customers will tell you, this feature is viewed as more of a nuisance than a convenience. According to NerdWallet, the general price for a cleaning fee is around $75, but can vary greatly between listings, with some units having cleaning fees that are higher than the nightly rate (all while sometimes still being asked to do certain chores before checking out). And often none of these fees show up in the total price until right before the booking confirmation, leaving many travelers feeling confused and taken advantage of.

However, some hosts are opting to build cleaning fees into the overall price of their listings, mimicking the strategy of traditional hotels.

Rachel Boice runs two Airbnb properties in Georgia with her husband Parker—one being this fancy glass plane tiny house (seen below) that promises a perfect glamping experience.

@rachelrboice Welcome to The Tiny Glass House 🤎 #airbnbfinds #exploregeorgia #travelbucketlist #tinyhouse #glampingnotcamping #atlantageorgia #fyp ♬ Aesthetic - Tollan Kim

Like most Airbnb hosts, the Boice’s listing showed a nightly rate and separate cleaning fee. According to her interview with Insider, the original prices broke down to $89 nightly, and $40 for the cleaning fee.

But after noticing the negative response the separate fee got from potential customers, Rachel told Insider that she began charging a nightly rate that included the cleaning fee, totaling to $129 a night.

It’s a marketing strategy that more and more hosts are attempting in order to generate more bookings (people do love feeling like they’re getting a great deal) but Boice argued that the trend will also become more mainstream since the current Airbnb model “doesn’t feel honest.”

"We stay in Airbnbs a lot. I pretty much always pay a cleaning fee," Boice told Insider. "You're like: 'Why am I paying all of this money? This should just be built in for the cost.'"

Since combining costs, Rachel began noticing another unexpected perk beyond customer satisfaction: guests actually left her property cleaner than before they were charged a cleaning fee. Her hypothesis was that they assumed she would be handling the cleaning herself.

"I guess they're thinking, 'I'm not paying someone to clean this, so I'll leave it clean,'" she said.

This discovery echoes a similar anecdote given by another Airbnb host, who told NerdWallet guests who knew they were paying a cleaning fee would “sometimes leave the place looking like it’s been lived in and uncleaned for months.” So, it appears to be that being more transparent and lumping all fees into one overall price makes for a happier (and more considerate) customer.

These days, it’s hard to not be embittered by deceptive junk fees, which can seem to appear anywhere without warning—surprise overdraft charges, surcharges on credit cards, the never convenience “convenience charge” when purchasing event tickets. Junk fees are so rampant that certain measures are being taken to try to eliminate them outright in favor of more honest business approaches.

Speaking of a more honest approach—as of December 2022, AirBnb began updating its app and website so that guests can see a full price breakdown that shows a nightly rate, a cleaning fee, Airbnb service fee, discounts, and taxes before confirming their booking.

Guests can also activate a toggle function before searching for a destination, so that full prices will appear in search results—avoiding unwanted financial surprises.


This article originally appeared on 11.08.23

Representative photos by Elena Safonova and Mikhail Nilov|Canva

Man makes hilariously realistic song about medical insurance

Navigating the American healthcare system can give you a rage induced headache. Between the monthly premiums, copays, coinsurances and deductibles, it's enough to make you feel like you're going to lose it. But then there's finding a doctor that's in network that can convince the insurance company that you actually need the procedure they want to do.

Tarek Ziad, frustrated with the process of trying to schedule with an ophthalmologist took to Instagram with an original song that he sang a cappella. The song has people howling with laughter while simultaneously commiserating with the struggle of navigating referrals for specialty visits.

According to the lyrics of the song, the man was told he needed to see an ophthalmologist so he called his insurance company to see who was in his network. Ziad sings that calling his insurance company was no help because he was then told that he needed to contact his medical group. But what's a medical group? It's like peeling back an onion.


Ziad sings, "so you go online and you look at all the ophthalmologists and you call them one by one and you go through 29 ophthalmologists and every single one either doesn't answer your call or they don't actually take your medical group. They say 'we've never heard of that medical group.'"

Commenters related to his struggle trying to get into the right kind of doctor, or any doctor at all working within the American health insurance system.

"The realest thing I've seen in a phat minute," one person says.

"God the database being out of date and/or simply inaccurate is so infuriating. 'oh, no, I don't take that insurance.' or 'I used to but I stopped years ago idk why they still loist[sic] me,'" another writes.

"You’re going places. Not the ophthalmologist, but places," someone jokes.

"Step aside star spangled banner, there’s a new national anthem," a commenter jokes.

All joking aside, there were doctors in the comments expressing their frustration and sorrow around insurance companies. One commenter says it was cheaper and faster for her to fly back to Morocco to see an ophthalmologist for eye surgery than having it done the the United States. Yikes. Hopefully, Ziad can get in to see the right doctor soon. Maybe his next viral hit will be about billing.

Pop Culture

A brave fan asks Patrick Stewart a question he doesn't usually get and is given a beautiful answer

Patrick Stewart often talks about his childhood and the torment his father put him and his mother through.

Patrick Stewart often talks about his childhood and the torment his father put him and his mother through. However, how he answered this vulnerable and brave fan's question is one of the most eloquent, passionate responses about domestic violence I've ever seen.



WARNING: At 2:40, he's going to break your heart a little.

You can read more about Heather Skye's hug with Captain Picard at her blog.


This article originally appeared on 06.26.13.


Representative image from Canva

Because who can keep up with which laundry settings is for which item, anyway?

Once upon a time, our only option for getting clothes clean was to get out a bucket of soapy water and start scrubbing. Nowadays, we use fancy machines that not only do the labor for us, but give us free reign to choose between endless water temperature, wash duration, and spin speed combinations.

Of course, here’s where the paradox of choice comes in. Suddenly you’re second guessing whether that lace item needs to use the “delicates” cycle, or the “hand wash” one, or what exactly merits a “permanent press” cycle. And now, you’re wishing for that bygone bucket just to take away the mental rigamarole.

Well, you’re in luck. Turns out there’s only one setting you actually need. At least according to one laundry expert.

While appearing on HuffPost’s “Am I Doing It Wrong?” podcast, Patric Richardson, aka The Laundry Evangelist, said he swears by the “express” cycle, as “it’s long enough to get your clothes clean but it’s short enough not to cause any damage.”

Richardson’s reasoning is founded in research done while writing his book, “Laundry Love,” which showed that even the dirtiest items would be cleaned in the “express” cycle, aka the “quick wash” or “30 minute setting.”


Furthermore the laundry expert, who’s also the host of HGTV’s “Laundry Guy,” warned that longer wash settings only cause more wear and tear, plus use up more water and power, making express wash a much more sustainable choice.

Really, the multiple settings washing machines have more to do with people being creatures of habit, and less to do with efficiency, Richardson explained.

“All of those cycles [on the washing machine] exist because they used to exist,” he told co-hosts Raj Punjabi and Noah Michelson. “We didn’t have the technology in the fabric, in the machine, in the detergent [that we do now], and we needed those cycles. In the ’70s, you needed the ‘bulky bedding’ cycle and the ‘sanitary’ cycle ... it was a legit thing. You don’t need them anymore, but too many people want to buy a machine and they’re like, ‘My mom’s machine has “whitest whites.”’ If I could build a washing machine, it would just have one button — you’d just push it, and it’d be warm water and ‘express’ cycle and that’s it.”
washing machine

When was the last time you washed you washing machine? "Never" is a valid answer.

Canva

According to Good Housekeeping, there are some things to keep in mind if you plan to go strictly express from now on.

For one thing, the outlet recommends only filling the machine halfway and using a half dose of liquid, not powder detergent, since express cycles use less water. Second, using the setting regularly can develop a “musty” smell, due to the constant low-temperature water causing a buildup of mold or bacteria. To prevent this, running an empty wash on a hot setting, sans the detergent, is recommended every few weeks, along with regularly scrubbing the detergent drawer and door seal.

Still, even with those additional caveats, it might be worth it just to knock out multiple washes in one day. Cause let’s be honest—a day of laundry and television binging sounds pretty great, doesn’t it?

To catch even more of Richardson’s tips, find the full podcast episode here.


This article originally appeared on 2.4.24

National Autistic Society/Youtube

"Diverted" educational video shared through the Too Much Information Campaign.

Everyone who lives with autism experiences it somewhat differently. You'll often hear physicians and advocates refer to the spectrum that exists for those who are autistic, pointing to a wide range of symptoms and skills.

But one thing many autistic people experience is sensory processing issues.


For autistic people, processing the world around them when it comes to sight, smell, or touch can be challenging, as their senses are often over- or under-sensitive. Certain situations — like meandering through a congested mall or enduring the nonstop blasting of police sirens — can quickly become unbearable.

This reality is brought to life in a new video by the U.K.'s National Autistic Society (NAS).

The eye-opening PSA takes viewers into the mind of a autistic woman as she thinks about struggling to stay composed in a crowded, noisy train.

It's worth a watch:

The PSA hit especially close to home for 22-year-old actress and star of the video Saskia Lupin, who is autistic herself. "Overall I feel confused," she said, of abrupt changes to her routine. "Like I can't do anything and all sense of rationality is lost."

She's not alone.

According to a study cited in NAS' press release, 75% of autistic people say unexpected changes make them feel socially isolated. What's more, 67% reported seeing or hearing negative reactions from the public when they try to calm themselves down in such situations — from eyerolls and stares to unwelcome, hurtful comments.

The new PSA aims to improve that last figure in particular.

It's part of the organization's Too Much Information campaign — an initiative to build empathy and understanding in allistic (i.e., not autistic) people for those on the spectrum.

Autism Awareness Day, campaign, World Autism Awareness Week

Campaign by National Autistic Society created to share the autistic experience to the world.

Photo from Pixabay

"It isn't that the public sets out to be judgmental towards autistic people," Mark Lever, chief executive of the NAS, said in a statement in 2016. It's just that, often, the public doesn't "see" the autism.

"They see a 'strange' man pacing back and forth in a shopping center," Lever explained, "or a 'naughty' girl having a tantrum on a bus, and don't know how to respond."

Well, now we do.

Instead of staring, rolling your eyes, or thinking judgmental thoughts about the young person's parents, remember: You have no idea what that stranger on the train is going through.

“We can't make the trains run on time," said Lever. But even the simplest, smallest things — like remembering not to stare and giving a person some space and compassion if they need it — can make a big difference.


This article originally appeared on 03.28.18