Category: Health

By Cassie Larkin, as told to Stephanie Watson

Treating our son, Kyan, for atopic dermatitis (eczema) has been a long haul. He was about 6 weeks old when we first noticed that he was breaking out in rashes. That was in May or June of 2013. We just figured he was sensitive to the heat.

Kyan was a pretty fussy baby. We tried switching him to different formulas, but his skin wasn’t getting any better. Between the fussiness and the rashes, we had him tested. That’s when he was diagnosed with eczema.

I had eczema as a baby, but I grew out of it pretty quickly. By age 2 or 3, my skin had cleared. That wasn’t the case for Kyan.

By age 2, his skin was just getting worse. The eczema was everywhere. We tried every cream, every lotion, every ointment. We put him in cotton pajamas and gloves. We rubbed oil onto his head to soothe his itchy scalp.

The pediatrician who was handling his care kept telling us, “This is normal. We have a lot of kids with eczema. Just try these lotions.” But the lotions weren’t touching the eczema and it wasn’t going away. It was constant.

It Takes a Little Piece of You

As a parent, your job is to take care of your children and try to make them feel better when they’re sick. When you can’t make them feel better, it takes a little piece of you.

Watching Kyan suffer took a big piece of me. His skin was open and cracked. He had to be hospitalized for staph infections. We bathed him in diluted bleach, which burned his skin so much that he would scream and cry, but it was the only way to stop the infections.

Our daily eczema routine was 2½ hours long. At bedtime, we would bathe Kyan, then apply ointment all over his body to keep the inflammation down, and then put lotion on to seal in that moisture. Finally, we’d dress him in wet pajamas to soothe his skin enough so that he could sleep. Our morning routine was almost as long.

We tried a variety of medications, including the immune-suppressing drug methotrexate, which basically crashed Kyan’s damaged immune system to try to rebuild it. Every other week we had to get blood draws to see if the drug was damaging his kidneys and liver. We basically had to keep him in a bubble to prevent him from getting an infection.

Relentless

Eczema was affecting every part of Kyan’s life. His hands were so inflamed and cracked that he couldn’t hold a pencil or bend his fingers to write in school. And he was so itchy and uncomfortable that he couldn’t pay attention in class. His teachers thought he might have autism or ADHD because he couldn’t focus, but he couldn’t focus because he was so uncomfortable.

Kyan suffered not only physically, but also emotionally. The kids teased him. They didn’t understand why he wore gloves to school. They didn’t get why his face was so blotchy. His teachers noticed the dead skin cells on his head and the way he’d scratch at his scalp and they kept flagging him for lice, which made the teasing even worse. Many times he would come home from school crying.

The eczema was relentless. It wasn’t stopping and it wasn’t getting better. I knew I had to be an advocate for my child. What we had tried so far wasn’t working.

We were referred to pediatric dermatologist Sheilagh Maguiness, MD, at M Health Fairview in Minneapolis. I just broke down in Dr. Maguiness’s office. I said, “I can’t do this anymore.”

New Hope

When dupilumab (Dupixent) first came on the market, I remember Dr. Maguiness saying, “We need to get Kyan on this drug.”

The trouble is, dupilumab is expensive — about $3,000 an injection. We battled for 2 years with our insurance company, which wouldn’t cover the cost because the drug wasn’t approved yet for Kyan’s age group. Then in 2020, finally dupilumab was approved and we were able to get our insurance company to pay for it.

The medication has been huge for Kyan. We saw results within 3 weeks. There were no more open sores. We stopped needing to do the bleach baths and steroid creams. Within a few months, his skin was clear.

Today, we just give Kyan one shot every 2 weeks. And we apply lotion once a day, at night.

We hadn’t realized just how much atopic dermatitis had consumed our lives because it was our normal. Finding relief for Kyan has been huge. It’s been shocking how much freedom we have and how much better he feels.

Kyan has progressed so much, both emotionally and educationally, that it’s almost unreal. Now he’s in second grade. He’s excelling in school. He’s creating new friendships. He doesn’t have to wear gloves or avoid touching certain things. He’s like everybody else now. And he has a confidence he didn’t have before.

Seeing how much Kyan has blossomed and flourished as a student and as a person has been awe-inspiring. I was finally able to take the pain away. I was finally able to make him OK. That’s all you want for your child, to make them feel better.

Our hope is that Kyan will outgrow the allergies and atopic dermatitis at some point in his life. The chances of that aren’t the greatest, but we’re keeping our fingers crossed. For now, we just want to give other families some hope and help them see there is a light at the end of the tunnel and they aren’t alone in the journey to get there. 

By Karen Chen, as told to Stephanie Watson

I’ve had atopic dermatitis for as long as I can remember. When I was little, I remember getting a lot of rashes in the areas where my joints are — the insides of my elbows and knees. I was itchy all the time.

My pediatrician and the other doctors I visited at the time said it was normal for children to have eczema. They told me I’d eventually grow out of it.

Constant Itching

I was so itchy that I had trouble falling asleep. I wore long-sleeved shirts to bed so that I wouldn’t scratch at my skin during the night.

My whole life revolved around catering to my eczema. I’d check the weather every day. If it was very dry or windy, I wouldn’t go outside. Just my hair hitting my face in the wind would irritate my skin.

I used to wear mainly dark clothes. My skin would bleed because I always had open wounds from scratching, and I was afraid of staining my white clothes.

I was so self-conscious that I went to great lengths to hide my skin. I wore long sleeves, even in the summer. Sometimes I wouldn’t leave my house when my eczema looked particularly bad.

Missing Out

I felt excluded from normal childhood activities. Many of them would exacerbate my skin. For example, I couldn’t swim because it would dry out my skin and make my eczema flare up. And if I got too sweaty while exercising, I would break out in itchy hives. When my friends wanted to go out for something to eat after school, I felt too terrible to join them.

I didn’t grow out of my eczema as my doctors had predicted. Instead, it started to get worse in high school. I was so itchy that I couldn’t focus in class and I couldn’t sleep at night. I started falling further and further behind. Because I didn’t want to tell my teachers that eczema was to blame, I came across as a student who didn’t try very hard.

I wish people understood how chronic illnesses affect people. Whenever I had to miss class in high school, I would tell my teachers and friends that I was out because I was sick. For most other people, being sick happens for a finite period of time — as long as it takes to get over a cold or other infection. There was an expectation that I would fully recover within a week and be back at school. But because my condition was/is chronic, whenever I would become “sick” with a bad flare-up, I’d remain bedridden without any timeline for recovery. It could be days, but more likely weeks and months, before I stopped flaring up and could go outside again. And when I did return, I felt only slightly less terrible and was still barely able to function.

Few people realize that eczema is a disability. Those around me were constantly minimizing my experience, and the effect the disease was having on my day-to-day life. If I hid my condition people didn’t take me seriously, and if I was honest about it, they didn’t want to be near me. It was a lose-lose situation.

Eczema affected me so much that it took me an extra year to graduate from high school. It felt like the world was moving on without me.

Trying Everything

I have tried just about every medication, and a few alternative therapies, to manage my atopic dermatitis. I went to pediatricians, dermatologists, and allergists for advice. I rubbed on topical steroid creams of various potencies, and got steroid injections. I tried phototherapy, which is essentially a tanning booth that blasts UV rays at you. I used antihistamines and various lotions to try to tame the itch. Nothing helped.

I went on strong pills that suppressed my immune system. I remember the warnings on the bottles, which said these medicines were for people who had just gotten an organ transplant. That was pretty scary. I just wanted my skin to stop breaking out.

I also tried a lot of fad skin care trends over the years, like drinking 10 cups of water a day or rubbing coconut oil on my skin. None of them worked. Neither did the herbal remedies my family recommended.

My doctor tested me for allergies, pricking my skin to see if it broke out in hives. During one test, my doctor put patches of common allergens on my back. The tape irritated my skin so much that it itched for the entire 3 days that it took to do the test.

I took part in a clinical trial of a biologic drug used to treat psoriasis. I stayed in that study for a whole year, but the drug didn’t help me.

By the time I was 16, my doctors stopped telling me that my eczema would improve with age. At that point they realized it wasn’t going away.

Gradual Clearing

I was always looking for new treatments. One day, I saw a story about dupilumab (Dupixent) in the news, and it looked very promising. I reached out to my doctor, Emma Guttman-Yassky, MD, at Mount Sinai in New York. I had moved to California by then, because I was hoping the warm climate might help clear my skin. I told Dr. Guttman-Yassky that I really wanted to get on this new drug, and she helped to expedite the process with my insurance company.

It’s a very expensive drug, so a lot of insurance companies want you to “prove” that you need it. They ask for an exhaustive list of everything you’ve tried, along with proof that nothing on the market has worked for you. I had to go through an extensive rejection and appeal process before I finally qualified for a patient assistance program.

Once I got on the medicine, it took a while for it to take effect. It was very gradual. But at some point, I realized that if I had a scab, it would go away in 3 months instead of the 3 or 4 years it used to take to clear up. And when I would apply steroid creams, for the first time they actually worked.

It took 6 months to a year for me to experience the full effects of the drug, but today I see a huge difference. When I was growing up, eczema was all over my body. Now I have only a few patches here and there. It’s very manageable. Most of the time I don’t even notice it’s there.

Unfortunately, there’s no cure for atopic dermatitis. I still get flare-ups, and I have to be careful about being outside for too long because the wind can dry out my skin. But compared to what I had before, it’s really manageable.

I feel better than I’ve felt in my entire life. The year before I started dupilumab, I was failing high school. Now I’m studying mechanical engineering at the University of California, Berkeley. It’s been night and day for me.

By Cara Murez 

HealthDay Reporter

THURSDAY, Oct. 27, 2022 (HealthDay News) — When there are suddenly creepy decorations and lots of knocks at the door from strangers, Halloween can be frightening for someone living with dementia.

It is possible to keep a loved one living with the disease calm and safe, while also including that family member in celebrating the holiday quietly, experts say.

“Like with many other traditions, there are adaptations families can make to help their relatives living with dementia have a safe and enjoyable Halloween,” said Jennifer Reeder, director of educational and social services for the Alzheimer’s Foundation of America.

“We encourage caregivers to follow a few quick and easy steps to keep the ‘Happy’ in ‘Happy Halloween’ on Oct. 31,” Reeder said in a foundation news release.

The foundation’s experts suggest adapting the celebration by reminiscing about past Halloween costumes or activities while looking at old family pictures. Watch a non-threatening program about Halloween.

Give your loved one healthy snacks, such as fruit. Too much candy can increase agitation.

For some, it may be possible to have a loved one with dementia help hand out candy to trick-or-treaters, but never leave the person alone to do so, which could be frightening, confusing and a safety risk, the foundation suggests.

Try playing calming music, engaging in a quiet activity such as reading a book together or providing soothing reassurance.

Minimize distress by avoiding potentially scary decorations, such as fake skeletons, cobwebs, witches and monsters. It’s especially important to avoid exposure to interactive decorations that talk or scream when someone passes by or that have flashing or flickering lights. These can scare and cause someone with dementia to wander away, even from their own home.

Stay safe with the lights on inside and outside the home, so burglars and vandals don’t think the house is empty, the foundation suggests. Another option for candy is to leave a bowl outside the door with a sign that says, “Please take one.”

The AFA Helpline at 866-232-8484 or via the website www.alzfdn.org offers an opportunity to speak with a licensed social worker seven days a week.

More information

The U.S. Centers for Disease Control and Prevention has more on dementia.

SOURCE: Alzheimer’s Foundation of America, news release, Oct. 24, 2022

By Amy Norton 

HealthDay Reporter

THURSDAY, Oct. 27, 2022 (HealthDay News) — When someone collapses in front of witnesses, the chances of receiving potentially lifesaving CPR may partly depend on the color of their skin, a new study suggests.

Researchers found that when Black and Hispanic Americans suffer cardiac arrest, they are up to 37% less likely than white people to receive bystander CPR in public places and at home.

The reasons for the disparity are not certain, but there are potential explanations, said senior researcher Dr. Paul Chan, of Saint Luke’s Mid America Heart Institute in Kansas City, Mo.

CPR trainings, he said, are less available in Black and Hispanic communities, and there are other barriers like cost, which may help account for the disparities in responses to at-home cardiac arrests.

But going into the study, the researchers expected that disparities would be lessened when cardiac arrests happened in public. With more people around, the chances that a bystander would be trained in CPR are greater.

Instead, the disparities were greater: Among cardiac arrests that happened at home, Black and Hispanic individuals were 26% less likely than white people to receive CPR. In public settings, that gap grew to 37%.

“That was striking. It wasn’t what we expected to see,” Chan said. “And it raises a lot of questions about why.”

Unfortunately, bias — conscious or not — could play a role, said Chan and other experts. Bystanders may be less likely to “make assumptions” about a white person who collapses, versus a Black or Hispanic person, Chan said.

Disparities were not, however, confined to cardiac arrests that struck in white neighborhoods, he noted.

Across neighborhoods of all incomes, and even in those that were majority Black or Hispanic, white cardiac arrest victims were more likely to receive bystander CPR.

Cardiac arrest occurs when the heart suddenly stops beating normally, due to a problem in its electrical system. Usually, the person collapses into unconsciousness and stops breathing normally. It is quickly fatal without emergency medical treatment.

If a bystander immediately starts CPR chest compressions, that can keep blood and oxygen flowing in the victim’s body until paramedics arrive. But in reality, only about 45% of Americans who suffer cardiac arrest outside of a hospital receive bystander CPR, according to the American Heart Association.

The new findings, published Oct. 27 in the New England Journal of Medicine, are in line with that statistic.

Chan’s team used a large U.S. registry to find more than 110,000 cases of cardiac arrest where witnesses were present. Despite that, most victims did not receive CPR, with rates particularly low for Black and Hispanic people.

When they suffered cardiac arrest at home, about 39% received CPR, versus 47% of white people. And when the arrest happened in public, just under 46% of Black and Hispanic victims received CPR, versus 60% of their white counterparts.

Such disparities were seen whether the surrounding neighborhood was mostly white, racially diverse, or majority Black or Hispanic, and whether it was high- or low-income.

“It’s sad, it’s heartbreaking,” said Dr. Katie Berlacher, a member of the American College of Cardiology Health Equity Task Force and a cardiologist at the University of Pittsburgh.

Yet she also said she was not surprised. Even though more people are available to respond to a cardiac arrest in a public setting, Berlacher said, those people can have biases, conscious or not. Those biases, she noted, can affect how quickly they approach the person who collapsed, call 911 or try to find someone who knows CPR.

Dr. Anezi Uzendu has worked with the heart association in developing a “toolkit” for reducing disparities in cardiac arrest care and survival. He is also a cardiac arrest survivor, thanks in part to the action of bystanders who administered CPR after he collapsed, at age 25, while playing basketball at his gym.

“It can happen to anybody,” said Uzendu, who is also a cardiologist with Saint Luke’s but was not involved in the study.

Uzendu beat the odds, as cardiac arrest survival is low, at around 12%, according to the heart association. And studies show that survival is even lower for Black and Hispanic people, versus whites.

CPR can double or triple the chances of survival, and it’s been thought that better access to CPR training could close the racial divide in cardiac arrest survival.

But the new findings indicate that CPR training is not the sole solution, Uzendu said.

“Some of this disparity may be due to lack of training,” he said. “Some of it may be due to structural racism. Some of it may be due to implicit or explicit biases.”

That said, all three doctors agreed that greater access to CPR training could make a big difference — particularly since an estimated 70% of cardiac arrests happen at home, where bias would presumably not be the issue.

One way to do that, Chan said, is by offering free or low-cost trainings at convenient locations such as churches or community centers in underserved neighborhoods.

Trainings should also involve people of color, Berlacher said — from instructors to the actors in the course videos.

As for cardiac arrest survival, Chan’s team found what previous studies have: Black and Hispanic people more often died. Of those who suffered cardiac arrest in public, just under 23% survived, compared with almost 32% of white people.

“CPR can make a huge difference in survival,” Chan said.

More information

The American Heart Association has more on learning CPR.

SOURCES: Paul S. Chan, MD, professor, medicine, cardiologist, University of Missouri-Kansas City School of Medicine, Saint Luke’s Mid America Heart Institute, Kansas City, Mo.; Kathryn Berlacher, MD, MS, assistant professor, medicine, medical director, Magee Women’s Heart Program, University of Pittsburgh Medical Center, and member, Health Equity Task Force, American College of Cardiology, Washington, D.C.; Anezi Uzendu, MD, interventional cardiologist, Saint Luke’s Mid America Heart Institute; New England Journal of Medicine, Oct. 27, 2022
 

Oct. 27, 2022 — Adults who have chronic gastroesophageal reflux disease (GERD) and their primary care doctors may not know they need to be screened for a condition called Barrett’s esophagus, a precursor to cancer of the esophagus. 

People with GERD are at risk for Barrett’s and cancer of the esophagus. Yet in a survey of 472 adults with GERD, only 13% had ever been advised by their doctor to undergo screening endoscopy and even fewer actually had the imaging test. 

“These results make it clear that screening is rarely done,” says Jennifer Kolb, MD, with UCLA School of Medicine, who worked on the survey.

About 20% of people in the United States have GERD, which happens when stomach acid repeatedly flows back into the esophagus, the tube connecting the mouth and stomach. This backflow (acid reflux) can irritate the lining of the esophagus.

People with GERD may have heartburn, a burning sensation in the back of the throat, chronic cough, laryngitis, and nausea. 

About 1 in 10 adults with chronic GERD symptoms will develop Barrett’s esophagus – a condition in which the lining of the esophagus becomes damaged by acid reflux. Barrett’s esophagus is associated with a small increased risk of developing cancer of the esophagus. 

Current guidelines recommend screening for Barrett’s esophagus using endoscopy – in which a long, thin tube is inserted into the body to look for problems — for those at risk, which includes people with chronic GERD along with other risk factors such as being over 50 years old, being male or white, smokers, people with obesity, and those with family history of Barrett’s or cancer of the esophagus. 

But the current survey shows a clear lack of knowledge about risk factors and indications for Barrett’s screening among adults with GERD. 

Only about two-thirds correctly identified Barrett’s risk factors and only about 20% believed screening was necessary with GERD. 

“If you have three or more risk factors, screening should definitely be discussed and considered,” says Prasad Iyer, MD, with Mayo Clinic in Rochester, MN.

Yet this survey shows that patients with GERD “don’t have the knowledge of when they should get medical attention and possibly endoscopy,” adds Seth Gross, MD, with NYU Langone Health in New York City.

People of color with GERD appear to be most worried about developing Barrett’s but have the highest barriers to completing screening.

For some people, fear of discomfort with endoscopy is a barrier to getting the test.  

To perform an endoscopy, a doctor inserts a long, flexible tube with a camera attached down the throat and into the esophagus after giving the patient a sedative. Once the tube is inserted, the doctor can visually inspect the lining of the esophagus and remove a small sample of tissue toconfirm a diagnosis of Barrett’s. 

However, newer, less invasive screening options are increasingly available or in development.

One is the so-called Cytosponge, a small, capsule-shaped device the size of a multivitamin. A thin string is connected to a sponge inside the capsule. 

When swallowed, the capsule dissolves and the sponge expands. The string is then gently pulled to remove the sponge. As it’s removed, the sponge collects cells from the entire length of your esophagus, which are used to make a diagnosis of Barrett’s.