I lived with the painful skin condition for years. But when my daughter began tearing at her hands during eczema flare ups, I signed us up for a clinical trial.
Her hands were bloodied and oozing, yet she was compelled to dig her fingernails in deeper — the pain worth it, if it would quell the urge to scratch. I would watch in helpless horror as my 9-year-old daughter, Emily, tore her hands apart every time her eczema flared.
Another eczema sufferer Sydney Bentley, age 10, gets it. “It’s not like: ‘Should I itch or should I not itch? I think I’ll itch.’”
“It’s like, ‘itch, itch, itch, you have to itch. Do it, do it,’” said Sydney.
Eczema causes skin to become red, inflamed and severely itchy. At least 30 million Americans deal with some form of it. Many are children. And like my daughter, many can’t control it effectively with creams and special ointments.
I’d lived with my own eczema for decades without much thought, but sit back and watch my girl suffer? Unacceptable.
I learned of a clinical trial starting at the National Institute of Allergy and Infectious Diseases, part of the National Institutes of Health. The study would test the safety of a bacteria spray designed to help fight Staphylococcus aureus.
S. aureus is a type of bacteria that normally lives harmlessly on our skin, but is known to contribute to eczema flare-ups. Within weeks, I was sitting with lead investigator, Dr. Ian Myles, peppering him with questions.
Although I am a health reporter within NBC News, this was not an interview for work. I was a study participant. Patient number one.
THE MICROBIOME’S ROLE
Our skin is essentially a giant petri dish. Billions of microbes co-exist peacefully on healthy skin.
“And that’s a good thing,” explained Dr. Adam Friedman, associate professor of dermatology at GW School of Medicine & Health Sciences. “They actually help protect us from all the disgusting stuff out there. They also help regulate our immune system to keep everything at bay.”
But there’s a problem in people with eczema: a lack of diversity in the skin’s microbiome. There are fewer “good guys” to fight off “bad guys” — in this case, Staphylococcus aureus.
Myles’s team had found a certain type of bacteria — Roseomonas mucosa — strengthened skin cells and killed off the “bad” S. aureus, at least in lab and rodent studies. What’s more, it was found on the skin of healthy people who did not have eczema.
Was I willing to spray this “good” bacteria on my arms to see if it was safe to try on kids with eczema? Absolutely. Nine other adults followed.
Spoiler alert: it was safe and on many, effective.
On Thursday, the NIH released initial findings from the study, saying that the topical treatment reduced severity of atopic dermatitis.
“WE COULDN’T KEEP HER FROM SCRATCHING”
Amy Bentley, of Clarksburg, Maryland, had learned of the study and thought of her daughter, Sydney.
“It’s so frustrating to see your child really suffering and not have a good idea of how you can help them,” says Bentley. “She started having problems as a young toddler. I remember there were nights when we would put gauze all over her midsection and tape it up because we couldn’t keep her from scratching.”
Sydney became one of the five pediatric patients in Myles’s study. She has the classic fiery red eczema rash on her arms, the backs of her legs and on her neck. Sometimes other kids ask her about it.
“There’s always the moment when some random kid comes up and says, ‘what’s that?’ And that’s just… trying to explain it is terrible,” said Sydney.
Amy Bentley sprayed Sydney’s arms with increasing concentrations of Roseomonas mucosa twice a week for several months. They saw results after the first few treatments, though no cure.
“We still have to do our regular maintenance regimen — still moisturizing and all of that,” said Amy. “But it’s definitely much better than it was. The whole baseline has shifted to where her skin stays much better.”
The NIAID study was small — just 15 patients. Ten of them benefited, said Myles: “It reduced their rash; it reduced their itching. It reduced the amount of topical steroids they felt that they needed to keep their disease under control.”
Sydney had a more glowing review:
“Amazing that they can fit so many heroes in that little bottle.”
FIGHTING S. AUREUS
Myles’s team is not the only one trying to figure out how best to control S. aureus in eczema patients.
Dr. Richard Gallo of the University of California, San Diego screened thousands of bacteria on human skin, and zeroed in on another kind of staph: S. hominis.
“It was very effective at killing the disease-causing bacteria S. aureus, and it also retained other anti-inflammatory functions,” said Gallo.
In Gallo’s research, patients use an over-the-counter lotion that’s mixed with the S. hominis bacteria. Early results have been promising.
“We hope to prove with large studies (that) it decreases the rash and protects people from S. aureus,” said Gallo. The project is expected to take two to three years.
There are millions of bacterial species in our environment. Most do nothing, although some might cause disease. The idea of applying “good bacteria” to skin is not new. The market is awash in probiotic creams and lotions touted to relieve eczema and other skin irritations. Experts who have spent years studying how bacteria affects skin warns buyers should beware.
“Current probiotic bacterial strains were not selected based on a knowledge of what they do, only that they were found on a healthy person or in an interesting place,” said Gallo. “This would be like taking a pill only because it was found in a pharmacy, but not knowing what it was supposed to do.”
Scientific research has to identify which probiotic is beneficial.
“Without that, it is all guesswork,” said Gallo.
NEXT UP: YOUNGER ECZEMA PATIENTS
Myles’s team is moving forward with larger trials, and with younger patients.
“Kids’ microbiomes tend to be highly variable until they’re roughly four or five years old, and then it somewhat gels,” said Myles. “So the earlier you can intervene, the earlier you can provide the child with a healthy microbiome, the better it will be long term.”
Experts suggest future eczema solutions may involve various types of bacteria and possibly fungi.
Friedman suspects any research on probiotics to help restore a healthy microbiome will need to include prebiotics, fuel for that good bacteria.
“Prebiotics are things that are needed for these organisms or bacteria or viruses or fungi that live on our skin to survive and grow the right way. My philosophy: it’s not one or the other; you need both. If you throw one bacteria into a hostile environment, where it can’t survive, guess what? It’s not going to survive. If you give it the support it needs, it will do what it’s meant to do, which is re-establish the diversity,” said Friedman.
And perhaps that’s what my daughter and I will need. We were one of the few for whom the Roseomonas mucosa spray did not work. We still wrap her hands almost nightly. She still claws at her eczema rashes. I still worry her open sores will become infected.
Sydney Bentley gets it. “I know how terrible it is for me to have eczema, and I know mine’s probably not one of the worst cases,” she said.
“Even if this won’t cure me, I hope it will give scientists some data so that other kids can be cured, because I don’t want other people to have to suffer through it.”
Article by : by Erika Edwards