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Internet strangers are helping each other manage chronic illnesses. It's wonderful.

The web can't cure chronic illness, but it can help make it seem less daunting.

Internet strangers are helping each other manage chronic illnesses. It's wonderful.
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Seventh Generation

Being diagnosed with a chronic health problem can be terrifying and isolating — even more so if it means changing your diet, your lifestyle, and the products you bring into your home.

I know because it happened to me.

It was 2000, and I was 21 years old, broke, and sick when a new doctor diagnosed me with celiac disease. After a few visits, he told me I had celiac disease with lactose intolerance. If I wanted to start feeling better, I needed to cut out almost all grains and dairy products.


Just some of the enemies of my fragile digestive system.

Suddenly my entire world was different.

I couldn't eat any of my staple student foods anymore: Farewell, ramen. Adios granola. And I quickly learned that gluten was in almost everything — even products it has no reason to be in, like chewing gum. I was clueless and freaked out.

Thankfully, I had the internet — and so did dozens of other celiac sufferers. We congregated on forums, sharing stories, "safe" food recommendations, and strategies for eating in restaurants. My internet forum friends were my lifeboat, and I held on with both hands to the knowledge they shared.

Taking back control from a chronic illness requires compassion, understanding, and a lot of learning.

For people with chronic health conditions, the web can be an amazing resource to do that.

"Dear Internet: Today I learned licorice is made from wheat flour? Beware and learn from my sadness." — Me in 2002. Image by iStock.

Organizations like Beyond Celiac and The Celiac Foundation have hugely informative websites and vibrant online communities dedicated to helping people get a handle on their disease and access tools and information so they can recover and thrive.

Their online resources include food databases, grocery store apps, restaurant listings, message boards, information about political activism, even a gluten-free dating website. There are active blogger networks too, sharing personal stories, recipes, and motivation.

Resources for people with chronic illness — particularly those triggered by external factors — exist largely because there's nowhere else to turn.

A beautiful gluten-free restaurant meal — perfect for Instagram. Image by iStock.

For people with celiac disease, psoriasis, migraines, and asthma, knowing whether a product is safe to use or consume can be the difference between a normal day and a serious flare-up that might leave them bedridden or worse.

It's really only in the last five years that companies and government regulators started taking the requests of the growing ingredient transparency movement seriously. That spurred a huge increase in the number of products with detailed ingredients lists and more companies realizing that giving consumers access to information can help sales. Particularly for people with asthma, it is much simpler to avoid a common symptom trigger and find truly fragrance-free cleaning and personal care products. For others, change hasn't happened as quickly.

The U.S. Food and Drug Administration agreed to move forward on implementing rules for a gluten-free designation in 2004.

It didn't issue its final guidelines until 2013.

The new regulations allow companies producing gluten-free food products that contain less than 20 parts per million of gluten (a barely negligible amount, and generally not enough to cause a reaction) to label them as "gluten-free." While the FDA assures consumers it will be regularly testing products once they've arrived on store shelves, companies aren't required to submit proof they've tested their products for gluten before they go to market. The regulations also don't apply to food service establishments, personal care products, or medication. Those issues notwithstanding, it is a remarkable step toward complete ingredient disclosure.

Managed properly, people with celiac disease, psoriasis, asthma, and other chronic illnesses can live happy, wonderful lives. But it takes work, diligence, compassion, and support.

Pictured: four people who just learned their mobile phones are celiac-friendly. No, not really. Image by iStock.

Since my celiac diagnosis in 2000, gluten-free food and other products have become a billion-dollar industry. I have good days and bad ones, and sometimes even my best food plans go awry and knock me out of commission for a while. That's the nature of a lifelong illness, and I've come to terms with it. A lot of that acceptance comes from knowing I'm not alone in this.

In the absence of full, government-regulated ingredients lists on every product I eat, wear, or use — there are big-hearted, experience-sharing online communities ready to step in and help me navigate life with a chronic illness.

Images courtesy of John Scully, Walden University, Ingrid Scully
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Since March of 2020, over 29 million Americans have been diagnosed with COVID-19, according to the CDC. Over 540,000 have died in the United States as this unprecedented pandemic has swept the globe. And yet, by the end of 2020, it looked like science was winning: vaccines had been developed.

In celebration of the power of science we spoke to three people: an individual, a medical provider, and a vaccine scientist about how vaccines have impacted them throughout their lives. Here are their answers:

John Scully, 79, resident of Florida

Photo courtesy of John Scully

When John Scully was born, America was in the midst of an epidemic: tens of thousands of children in the United States were falling ill with paralytic poliomyelitis — otherwise known as polio, a disease that attacks the central nervous system and often leaves its victims partially or fully paralyzed.

"As kids, we were all afraid of getting polio," he says, "because if you got polio, you could end up in the dreaded iron lung and we were all terrified of those." Iron lungs were respirators that enclosed most of a person's body; people with severe cases often would end up in these respirators as they fought for their lives.

John remembers going to see matinee showings of cowboy movies on Saturdays and, before the movie, shorts would run. "Usually they showed the news," he says, "but I just remember seeing this one clip warning us about polio and it just showed all these kids in iron lungs." If kids survived the iron lung, they'd often come back to school on crutches, in leg braces, or in wheelchairs.

"We all tried to be really careful in the summer — or, as we called it back then, 'polio season,''" John says. This was because every year around Memorial Day, major outbreaks would begin to emerge and they'd spike sometime around August. People weren't really sure how the disease spread at the time, but many believed it traveled through the water. There was no cure — and every child was susceptible to getting sick with it.

"We couldn't swim in hot weather," he remembers, "and the municipal outdoor pool would close down in August."

Then, in 1954 clinical trials began for Dr. Jonas Salk's vaccine against polio and within a year, his vaccine was announced safe. "I got that vaccine at school," John says. Within two years, U.S. polio cases had dropped 85-95 percent — even before a second vaccine was developed by Dr. Albert Sabin in the 1960s. "I remember how much better things got after the vaccines came out. They changed everything," John says.

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via The Walt Disney Company / Flickr

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Of course, there's a healthy way to approach such a potentially dangerous topic.

Telling your partner you find someone else attractive shouldn't be about making them feel jealous. It's probably also best that if you're attracted to a coworker, friend, or their sibling, that you keep it to yourself.

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Courtesy of CeraVe
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"I love being a nurse because I have the honor of connecting with my patients during some of their best and some of their worst days and making a difference in their lives is among the most rewarding things that I can do in my own life" - Tenesia Richards, RN

From ushering new life into the world to holding the hand of a patient as they take their last breath, nurses are everyday heroes that deserve our respect and appreciation.

To give back to this community that is always giving so selflessly to others, CeraVe® put out a call to nurses to share their stories for a chance to be featured in Heroes Behind the Masks, a digital content series shining a light on nurses who go above and beyond to provide safe and quality care to patients and their communities.

First up: Tenesia Richards, a labor and delivery nurse working in New York City who, in addition to her regular job, started a community outreach program in a homeless shelter that houses expectant mothers for up to one year postpartum.

Tenesia | Heroes Behind the Masks presented by CeraVe www.youtube.com

Upon learning at a conference that black mothers in the U.S. die at three to four times the rate of white mothers, one of the widest of all racial disparities in women's health, Richards decided to take further action to help her community. She, along with a handful of fellow nurses, volunteered to provide antepartum, childbirth and postpartum education to the women living at the shelter. Additionally, they looked for other ways to boost the spirits of the residents, like throwing baby showers and bringing in guest speakers. When COVID-19 hit and in-person gatherings were no longer possible, Richards and her team found creative workarounds and created holiday care packages for the mothers instead.

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