DiversityNursing Blog

By AnneClaire Stapleton

www.cnn.com 

"I had my own personal tanning bed in my home, and so did a lot of my friends growing up. ... Everyone tanned," Willoughby said. "I didn't really even think about the future or skin cancer at the time." 

After one of her classmates in nursing school was diagnosed with melanoma, Willoughby made her first dermatology appointment at age 21. Sure enough, she had skin cancer.

Now 27, Willoughby says she has had basal cell carcinoma five times and squamous cell carcinoma once. She goes to the dermatologist every six to 12 months and usually has a cancerous piece of skin removed at each checkup.

She's become a cautionary tale about the hazards of tanning beds, thanks to a selfie she posted last month on Facebook. The grisly image, taken after one of her cancer treatments, shows her face covered with bloody scabs and blisters. It's since been shared almost 50,000 times.

"If anyone needs a little motivation to not lay in the tanning bed and sun here ya go! This is what skin cancer treatment can look like," she wrote in a post along with the photo. "Wear sunscreen and get a spray tan. You only get one skin and you should take care of it."

One in five Americans will develop skin cancer in their lifetime, according to the American Academy of Dermatology. Exposure to tanning beds increases the risk of melanoma, the deadliest form of skin cancer, said the academy, which reports that more than 419,000 cases of skin cancer in the U.S. each year are linked to indoor tanning.

Melanoma is the most common form of cancer for adults 25-29 years old and the second-most common form of cancer for adolescents and young adults 15-29 years old, according to the academy. Warning signs include changes in size, shape or color of a mole or other lesion, the appearance of a new growth on the skin or a sore that doesn't heal. 

Risk factors for all types of skin cancer include skin that burns easily, blond or red hair and a history of excessive sun exposure, including sunburns and tanning-bed use -- dangers that the blonde, blue-eyed Willoughby now knows all too well. 

Willoughby, a registered nurse who now lives in northern Alabama, said she never expected the Facebook picture of her damaged face to go viral. 

But she's excited to think her story might save someone's life.

"I've lost count of how many people shared it now and told me I've helped them," she said. "It's really cool to hear people say they won't tan anymore. I've had mothers thank me after sharing my pictures with their daughters. People in my hometown said they are selling their tanning beds.

"I never thought about the future when I was in high school; I just tanned because it was normal to me." 

Willoughby knows she'll deal with the consequences of tanning for the rest of her life. She's at high risk for developing melanoma but is now doing everything she can to ensure that she's around for her husband, Cody, and their young son, Kayden, for years to come. 

"Learn from other people's mistakes," she wrote on Facebook. "Don't let tanning prevent you from seeing your children grow up. That's my biggest fear now that I have a two-year-old little boy of my own."

By SYDNEY LUPKIN

http://abcnews.go.com 

If not for a stranger halfway around the world, 8-year-old Grant Berg wouldn't be alive today, his mother said.

Grant needed a bone marrow transplant, but after an international search, it was an 18-year-old German college student who came to his rescue in 2011, Grant's mother, Kristi Berg told ABC News. And on Sunday night, Grant and his hero met for the first time at the Los Angeles International Airport.

"I've imagined it so often in my mind and now it is reality," Grant's bone marrow donor, Marvin Zumkley, 22, told KABC-TV, ABC's Los Angeles station. "It was crazy. It was overwhelming, and it was just a good feeling."

A year and a half before the transplant, Grant was diagnosed with aplastic anemia, a rare but serious condition in which the bone marrow stops producing new blood cells, Berg said. This includes red blood cells, which carry oxygen; white blood cells, which fight off infection; and platelets, which mend blood vessels and stop bleeding, according to Dr. Hillard Lazarus, who directs UH Case Medical Center's novel cell therapy program in Cleveland but has not met or treated Grant.

"You need to treat this thing," Lazarus said, adding that it's often unclear what causes aplastic anemia. But only about 600 to 900 people are diagnosed with it every year.

Berg said Grant was getting different kinds of transfusions every week for a year and a half before the transplant.

"For a year and a half, he lived off other people's blood," Berg said. "I can't even count the amount of transfusions he had."

And then Zumkley's bone marrow changed Grant's life, she said. “It means everything to me," she added.

Grant was also born with only part of his cerebellum, so he'll be tested later this year for genetic conditions, she said.

After staying up well past his bedtime to meet Zumkley, Grant fell asleep in the car on the ride home to Temecula, California, Berg said. The plan is for Zumkley to relax for a few days, visit Disneyland and find other ways to enjoy southern California and get to know Grant, she said.

BY MAGGIE FOX

www.nbcnews.com 

Hospital workers wash their hands hundreds of times a day. Nurses are constantly using alcohol gels, chemical wipes and iodine washes on themselves and on patients.

Now that there's a hand sanitizer dispenser at every hospital room door, it's time to check that they actually do work as well as everyone assumes and that they are safe, the Food and Drug Administration says.

So FDA issued a proposed plan Thursday for reclassifying some of the products, and for requiring makers to show they are safe and effective.

"We're not asking for any of these products to come off the market at this time."

In the meantime. FDA says, there's nothing for consumers to worry about and hospitals should continue using the products as they have been.

"What it seems they are doing is good due diligence," says Dr. Susan Dolan of Children's Hospital Colorado and the Association of Professionals in Infection Control.

"They are trying to look at the products, look at how they are being used today, how things have changed," she added.

The FDA proposes new rules making companies submit new studies looking at safety issues such as whether heavy, chronic use of the some of the products may cause them to soak in through the skin, or cause resistant bacteria to evolve.

Products that are not shown to be safe and effective by 2018 would have to be reformulated or taken off the market.

"We're not asking for any of these products to come off the market at this time. We're just asking for additional data," Theresa Michele, a director in FDA's drug center, said in an interview with The Associated Press. "And we're likewise not suggesting that people stop using these products."

Alcohol, iodine benzalkonium chloride and other germ-killers have been used for decades. But not to the degree that they are now.

"Twenty years ago you didn't find people using antiseptic gels 100 times a day. It just didn't happen," Michele said.

FDA points to studies that show some of the products might be absorbed into the body at higher levels than previously thought, showing up in blood and urine. Dolan says not all the studies show this, but it's worthwhile doing more checks.

"It's timely and it makes sense," Dolan said. "I do think consumers should not be worried. These are very effective products."

The FDA last updated its review of health care hand cleaners in 1994.

"They are trying to look at the products, look at how they are being used today, how things have changed."

"We emphasize that our proposal for more safety and effectiveness data for health care antiseptic active ingredients does not mean that we believe that health care antiseptic products containing these ingredients are ineffective or unsafe, or that their use should be discontinued," FDA said in its announcement.

The agency agreed to complete its review after a three-year legal battle with the Natural Resources Defense Council, an environmental group that accused the FDA of delaying action on potentially dangerous chemicals. In 2013 the FDA agreed to a legal settlement that included timetables for completing the review of various chemicals, including health care cleaners.

Environmentalists are mainly concerned about an ingredient called triclosan, which is used in most antibacterial soaps marketed to consumers. The agency issued a separate review of triclosan-containing consumer products in late 2013, saying more data are needed to establish their safety and effectiveness.

Written by Honor Whiteman

www.medicalnewstoday.com 

Infants born preterm are known to be at greater risk for neurodevelopmental disorders. Now, a new study by researchers from King's College London in the UK brings us closer to understanding why - premature birth reduces connectivity in brain regions linked to cognitive functioning.

First author Dr. Hilary Toulmin, of the Centre for the Developing Brain at King's College, and colleagues publish their findings in the Proceedings of the National Academy of Sciences.

Preterm birth - defined as the birth of an infant before 37 weeks gestation - affected more than 450,000 babies in the US in 2012.

It is a leading cause of neurological disability among children in the US. Babies born preterm are at higher risk of cerebral palsy, autism and attention-deficit hyperactivity disorder (ADHD), among other intellectual and developmental conditions.

For their study, Dr. Toulmin and colleagues set out to gain a better understanding of the brain connectivity among babies born preterm in an attempt to uncover clues as to why preterm babies are more likely to develop neurodevelopmental problems.

The researchers used functional magnetic resonance imaging (fMRI) to analyze the connectivity between two specific brain regions - the thalamus and the cortex - among 66 infants. Of these, 47 were born prior to 33 weeks gestation and 19 were born at full term - between 37 and 42 weeks gestation.

The team says they focused on the connectivity between the thalamus and the cortex because these are the brain connections that develop quickly during preterm infants' care in neonatal units.

Preemies showed reduced connectivity in brain area linked to higher cognitive functioning

Among the babies born at full term, the researchers found the connectivity between the thalamus and the cortex was very similar to that of adults, which the researchers say supports previous findings that infants are born with mature brain connections.

Among the preterm infants, however, the team identified reduced connectivity between areas of the thalamus and areas of the cortex associated with higher cognitive function. This may explain why preterm babies are at greater risk of neurodevelopmental problems later in childhood, say the researchers.

What is more, brain scans of the preterm infants revealed increased connectivity between the thalamus and an area of the primary sensory cortex that plays a role in processing signals from the face, lips, jaw, tongue and throat.

Preterm infants' earlier exposure to breastfeeding and bottle feeding may explain this finding, according to the team.

The team says the earlier a preterm baby was born, the more pronounced the differences were in brain connectivity.

Overall, the team believes their findings bring us a step closer to understanding why infants born preterm are at higher risk of neurodevelopmental problems.

Senior author Prof. David Edwards, also of the Centre for the Developing Brain at King's College, says modern science has allowed the team to assess brain connectivity among preterm infants - something he says would have been "inconceivable" only a few years ago.

"We are now able to observe brain development in babies as they grow, and this is likely to produce remarkable benefits for medicine," he adds.

Dr. Toulmin says the next steps from this research will be to gain a better understanding of how their findings are associated with learning and developmental problems among preterm children as they get older.

www.npr.org 

Over the last week, Baltimore's unrest has captured the nation's attention. Images of burning cars, the sounds of angry protesters and then peace rallies have dominated the airwaves and headlines.

As the city's health commissioner, I heard other stories. I spoke with a 62-year-old woman who had a heart attack a year ago and who had stopped taking her blood pressure and blood-thinning medications. Her pharmacy was one of the dozen that burned down, and neither she nor the other people in her senior housing building could figure out where to get their prescriptions filled. Her pills ran out two days before, and she'd planned to hold out until the pharmacy reopened.

A 55-year-old man called our health department. His mother was "stringing out" her inhalers and now had a cough and difficulty breathing. He also told us he had difficult-to-control diabetes and was using insulin every other day. He now was urinating frequently and reported blurry vision — symptoms of out-of-control diabetes. We called an ambulance to transport them both to the ER.

In the wake of fires and violence, the initial priority for health officials was to make sure that our acute care hospitals were protected and that staff and patients could get to them safely. In the immediate aftermath, our focus was on ensuring that injured patients got triaged and treated.

Nobody knew what lay ahead and how much more violence was to be expected. We worked with hospitals, the Fire Department, and other city and state partners to develop a hospital security plan and to convene daily phone calls with every hospital and health clinic.

As the days went on, we heard from more Baltimoreans. These were not the ones waving signs or appearing on national TV. These were people who were just trying to get by.

There was a 74-year-old woman who had abdominal pain for two days. She stayed in her apartment and put up with the pain rather than seeking care, because she thought she'd heard that her health center was closed. A middle-aged couple worried about their 22-year old son who was suffering from a manic episode. They didn't know who was available to help.

Our health department, under the leadership of Mayor Rawlings-Blake, worked with the Maryland health department and private partners around the city and state to provide these essential services. We set up the Baltimore Healthcare Access List to provide up-to-date and accurate information about closures and hours of operation for hospitals, clinics and pharmacies. We developed and implemented a Mental Health/Recovery Plan that included an around-the-clock mental health crisis line along with teams of licensed mental health professionals who were deployed in affected neighborhoods for group counseling and debriefing.

Things that seemed straightforward often were not. Transferring prescriptions from one pharmacy to another would seem easy. But what happens if the pharmacies are in different chains, or if the one that closed was an independent pharmacy where all records were destroyed? The nearest pharmacy may be just a few blocks away, but what if the patient has limited mobility and even a few blocks are prohibitive?

And, as we saw, what happens when the best-laid plans aren't known to residents? We arranged for individuals affected by pharmacy closures to call one central number — 311. Our health department team would then take care of the rest on a case-by-case basis, arranging for prescription transfers, transportation and medication delivery.

Amid all the news, our public health information wasn't getting through to all our community members. So we mobilized student volunteers from Johns Hopkins and other local universities to go door-to-door in all senior buildings in affected neighborhoods. We visited over 30 churches and knocked on hundreds of doors.

It is now a week after the initial wave of violence and unrest. Our city is quieter, but our work is nowhere near done. As we look to rebuilding and recovery, our efforts must be focused on addressing the needs of all those affected, including the ones whose stories we don't usually hear.

By FREIDA FRISARO

http://abcnews.go.com 

One morning last summer, Tony Smith slipped a multicolor tutu over his scrubs in the pre-op ward of a South Florida hospital to grant the wish of a young patient heading to surgery.

A photo of the tutu-clad Smith quickly became a hit online and within weeks, Tutu Tuesday was born at Joe DiMaggio Children's Hospital.

"That day, it was all about making a patient feel comfortable. Having me put on the tutu made her feel better," said Smith, an operating room assistant who has worked at the Hollywood, Florida, hospital for almost five years. "I never knew I would have that much impact. I didn't expect it to go viral."

But it did. Once employees saw the shot, they started asking Lotsy Dotsy — resident clown and unofficial keeper of the tutu — for their own frilly skirts to wear. Department by department, hospital staff adopted Tutu Tuesday.

It begins outside the hospital named for a baseball legend, where visitors are greeted by a valet whose tutu clashes with his normal uniform — shorts and a baseball jersey.

"People laugh and ask why I'm wearing a skirt," said John Aristizabal, who takes good-natured kidding as he parks cars. "It's all for the kids, to catch a smile."

On Tutu Tuesday, smiles are contagious.

Inside the hospital, tutus are everywhere. Doctors, nurses, technicians and receptionists don the colorful layers of tulle, decorated with polka dots and fancy bows as they go about the business of tending to patients. Even Nutmeg, the in-house therapy dog, has a specially designed pink tutu. Hospital administrators also play along, wearing tutus over their business suits.

Smith said he could have never imagined that such a simple act would catch on.

"It's for the patients," Smith said. "Just seeing you in a tutu brightens their day, and it can keep them from thinking about what's really going on."

That's exactly what pediatric anesthesiologist Dr. Bob Kaye has been doing for years. He's worn a variety of funny hats and wigs to help ease the fears of his young patients. Now he's added a tutu to his routine and has found that his patients and their parents like the distraction.

"If you can dress in a way that it not threatening and silly, maybe, and make the medical professional look not like the last person who gave them a shot in the doctor's office, then it's a lot easier to feel comfortable with them," he said. "I think it's an ice breaker."

On a Tuesday morning in March, Laurel Barnett and her 13-year-old daughter Julia arrived about 5:45 a.m. for surgery.

"Of course, not having any coffee and then coming in and seeing everyone in tutus is quite amusing," Barnett said. "It's not what you expected to see. It does give children a sense of relief that these people are not only here to help them, but there to have fun as well. It kind of takes their mind off of things."

Smith says he's not bothered at all by the stares and giggles as he makes his way through the hospital's corridors every Tuesday. He even offered his tutu to 12-year-old Brayden Wilmsmeyer, who along with his 10-year twin sisters Leah and Lexi spent spring break getting respiratory treatment at Joe DiMaggio.

The twins had borrowed tutus from two nurses for an impromptu photo session.

"Remember, you are a real man," Smith told Brayden as he pulled the tutu over his pants. "Don't let anyone tell you otherwise just because you're wearing a tutu."

Written by Markus MacGill

www.medicalnewstoday.com 

3D printing has come to the rescue of severe cases of a childhood disease in which the windpipe is softened, leading to collapse of the airway and breathing failure. Previously lacking any adequate intervention, tracheobronchomalacia has found an innovative fix in three babies whose condition presented them with little chance of reaching young childhood.

Researchers at the University of Michigan's C.S. Mott Children's Hospital in Ann Arbor say the three boys have become the "first in the world to benefit from groundbreaking 3D-printed devices" to stent their airways in such a way as to allow the supports to keep up with their growth.

A follow-up of all three patients published in the journal Science Translational Medicine shows the personalized bioresorbable splint implants have worked with "promising results."

Pediatric tracheobronchomalacia (TBM) sees excessive collapse of the airways during breathing that can lead to life-threatening cardiopulmonary arrests (halted heart and breathing).

The cartilage supporting the airway can strengthen as children with the condition grow, the study paper goes on to explain, but severe cases of the disease require aggressive treatment - and those children are at "imminent risk of death."

Before this new approach to provide an early treatment option for TBM, the only conventional therapies available also carried life-threatening complications of their own.

Babies needed tracheostomy tube placement with mechanical ventilation, requiring prolonged hospitalization, and complications often led to cardiac and respiratory arrest. For example, the rate of respiratory arrest owing to tube occlusion runs as high as 43% of pediatric tracheostomy procedures a year.

Survivors: Kaiba, Ian and Garrett

But none of the newly developed 3D-printed devices have caused any complications for the three children treated, including Kaiba, who at 3 months old was the first to receive the new technology, 3 years ago. The stents were also inserted into 5-month-old Ian and 16-month-old Garrett.

Designed to accommodate airway growth while preventing external compression over a period of time before bioresorption, the technology allows for the particular problem of radial expansion of the airway over the critical period of growth. "If a child can be supported through the first 24 to 36 months of tracheobronchomalacia, airway growth generally results in a natural resolution of this disease," write the authors.

Senior author Dr. Glenn Green, associate professor of pediatric otolaryngology at C.S. Mott, says: "Before this procedure, babies with severe tracheobronchomalacia had little chance of surviving. Today, our first patient Kaiba is an active, healthy 3-year-old in preschool with a bright future." Dr. Green adds:

"The device worked better than we could have ever imagined. We have been able to successfully replicate this procedure and have been watching patients closely to see whether the device is doing what it was intended to do.

We found that this treatment continues to prove to be a promising option for children facing this life-threatening condition that has no cure."

Dr. Green describes in the video below how he and his colleagues at the University of Michigan worked on finding the solution.

Dr. Green strives enthusiastically for the lives of babies born with the condition, which he says in a post on the hospital's Hail to the little victors blog is often misdiagnosed as treatment-resistant asthma. He adds that it is a rare congenital condition affecting about 1 in 2,200 births, and the severe cases are even rarer, with most children growing out of the milder cases by 2 or 3 years of age.

"Kaiba's parents, April and Bryan, were left watching helplessly each time he stopped breathing, praying that something would change and doctors' predictions that he would never leave the hospital again weren't true," writes Dr. Green in 2013.

The 3D-printed splints were computational image-based designed to be customizable so that the following parameters could be made bespoke to the individual patient's anatomy on "the submillimeter scale:"

• Inner diameter, length and wall thickness of the device
• Number and spacing of suture holes.

Not being a closed cylinder, the design of the tubes gave an opening to allow placement but also expansion of the radius as the airways grew. All the inserts placed around the airways were made of polycaprolactone, a polymer that harmlessly dissolves in the body at a rate to allow the technology time to support the growing cartilage.

For Garrett's bespoke device on his left bronchus, the opening had a spiral shape to it, to allow a device to be fitted concurrently around, and grow with, his right bronchus, too.

Freedom from intensive care treatments

The Michigan team also share findings showing that the success of the devices meant the young children were able to come off of ventilators and no longer needed paralytic, narcotic and sedating drugs.

There were improvements in multiple organ systems and problems that had prevented the babies from absorbing food, so now they could be free of intravenous therapy.

The research doctors had received urgent approval from the US Food and Drug Administration to do the procedures, but it is early days for the strategy to become routine for babies with TBM. The case report published today was not designed to test the safety of the devices - so it may yet be possible that rare complications are found to result from treatment in some cases. Dr. Green says:

"The potential of 3D-printed medical devices to improve outcomes for patients is clear, but we need more data to implement this procedure in medical practice."

The specialist surgeon performing the operations, Dr. Richard Ohye, head of pediatric cardiovascular surgery at C.S. Mott, believes the cases provide the groundwork for a potential clinical trial in children with less-severe forms of TBM.

By MALIA WOLLAN

www.nytimes.com 

Before surgeons stitched a kidney from a 32-year-old former Marine into his abdomen in March, Mark Kim spent almost two years on dialysis. He had lot of time to think while hooked up to the machine, three times a week, as it pumped his blood out of his body, purified it and pumped it back in. Sometimes he found himself mulling over how odd it was that a new kidney — the one thing he needed most — was something money couldn’t buy.

When his kidneys first failed him, all sorts of people offered to donate one: his neighbor, his two 20-something nieces, two old friends, his sister. But none could follow through, mostly because of incompatible blood types. Such supply-and-demand mismatches can cause prices to skyrocket in a normal market, and indeed, Kim heard hints about the organ’s economic value along the way. Once, at a backyard barbecue, a woman whispered to him that her mother purchased a kidney on the black market for $100,000.

Despite the crushing demand, the sale of kidneys is banned in every country in the world except Iran. In the U.S., more than 100,000 people with renal failure are on the list for a deceased-donor kidney, typically waiting between four and five years. Last year, 4,270 people died waiting. Few but free-market absolutists would argue for repealing the 1984 law banning the organ trade in the U.S., but most would agree something should be done to increase the supply of kidneys for transplant. In a sense, though, there’s already a global glut: While we are born with two kidneys, we can function just fine with one. The problem is that they’re stuck inside of us.

Kim would have continued to wait on the national list, despite having several willing donors, were it not for a company called BiologicTx. Thanks to its software, Kim was able swap his sister’s kidney for the Marine’s kidney. The Marine, a woman named Liz Torres, gave up her kidney to ensure that her mother got a kidney, which came from a young social worker, Ana Tafolla Rios, who was a better match. Rios passed hers along to secure one for her ailing mother from Keith Rodriguez, a young man from Fresno. He let go of his to procure one for his mom, Norma, a 52-year-old dental assistant with polycystic kidney disease. All these people underwent surgery over two days in March at the California Pacific Medical Center in San Francisco, in what is called a kidney-transplant chain. The software programs driving such chains create something like a marketplace for organs — but one where supply and demand are balanced not through pricing but through altruism.

A law-abiding American in need of a kidney has two options. The first is to wait on the national list for an organ donor to die in (or near) a hospital. The second is to find a person willing to donate a kidney to you. More than half the time, such donor-and-recipient pairs are incompatible, because of differences in blood type or the presence, in the donor’s blood, of proteins that might trigger the recipient’s immune system to reject the new kidney. The genius of the computer algorithms driving the kidney chains is that they find the best medical matches — thus increasing the odds of a successful transplant — by decoupling donors from their intended recipients. In the United States, half a dozen of these software programs allow for a kind of barter market for kidneys. This summer, doctors will most likely complete the last two operations in a record-breaking 70-person chain that involved flying donated kidneys on commercial airlines to several hospitals across the country.

Garet Hil, the founder and chief executive of the National Kidney Registry, the largest kidney-chain exchange program in the world, has a background in financial services, not medicine. He borrowed concepts from the brokerage industry when developing the registry’s algorithm. Hil founded the organization after the emotionally grueling experience of obtaining a kidney for his 10-year-old daughter. After seven family members, including Hil and his wife, volunteered to donate theirs, all seven were found to be a poor match. (Eventually they found a compatible cousin.)

Each chain starts with a completely altruistic donor, someone who expects nothing in return. In the case of the San Francisco chain, that person was Zully Broussard, a 55-year-old mental-health nurse who works in a prison. Broussard lost her 21-year-old son to bone-cartilage cancer in 2001. Then, in 2013, her husband died of colon cancer. “I know what it is to want an extra hour, an extra day, with someone you love,” she told me. Directed by the algorithm, Broussard’s kidney ended up inside a complete stranger, a 26-year-old factory worker, Oswaldo Padilla, with a 6-year-old daughter, setting off the 12-person chain that included Kim and his sister and ended with an interior designer named Verle Breschini.

Economists call an arrangement like this a matching market. “It is not fundamental to economic theory to assume people are selfish,” Alvin E. Roth, an economist who teaches at Stanford University, told me. Roth won the Nobel Prize in economics in 2012 for his work using game theory to design matching markets, which pair unmatched things in mutually beneficial ways — students with public schools and doctors with hospitals. In such markets, money does not decide who gets what. Instead, these transactions are more akin to elaborate courtships.

The classic example of a matching market is the college-admissions process. Every year, tens of thousands of students apply to Harvard University. But just because a student wants a spot in the freshman class and can afford tuition does not mean he gets in. Harvard must also wanthim to attend. In the case of kidney exchange, this matchmaking happens at a microcellular level. White blood cells contain genetic markers, proteins that help our immune systems distinguish between our bodies and foreign invaders. The more closely a transplant recipient’s genetic markers match a donor’s, the more likely the body is to adopt that foreign kidney as its own rather than attacking it.

All these genetic variables mean that linking unrelated donors and recipients requires the kind of computational heft humans can’t manage with pen and paper. For example, BiologicTx currently has 72 people in a computer database waiting to give or receive a kidney. Run the software to find biologically compatible matches among those 72 people, and you get 105,716 possible configurations — some long chains, others short. Some people in the database have no possible matches. Others, genetically blessed, have thousands of potential matching options within the pool. The software ranks those possible pairings based on hundreds of different immunological, genetic and demographic criteria, while also aiming to create longer chains of harder-to-match people which will ultimately result in more transplants.

Last year in the United States, 544 kidneys were transplanted through these paired exchange programs, and many other countries are beginning to adopt them. Surgeons in Poland, Italy and Argentina completed their first chains last year. As more donor-and-recipient pairs enroll, the chains can accommodate increasingly complicated transactions. In December, for example, a transplant surgeon at U.C.L.A. removed the kidney from a grandfather who donated on behalf of his young grandson. The boy suffers from chronic kidney disease, but his doctors have determined he does not yet require a transplant. The grandfather feared that if he waited the five or 10 years until the boy needed the kidney, he would be too old to donate. So the boy and his grandfather joined the National Kidney Registry, using the grandfather’s kidney to kick off a chain, thereby securing a kidney for the boy, who will be the last recipient in another chain at some unspecified future date.

Mark Kim had his operation two months ago, and ever since, people have been telling him that his voice seems different, that somehow he sounds more alive. And at a biological level, every cell in his body feels better. But that vitality extends beyond his physical well-being. He is now one link in a visceral chain of sacrifice and benefit. It feels, to him, a little bit like kinship.

By Jacque Wilson and Deborah Brunswick

www.cnn.com 

It was just another day with another massive allergic reaction. 

She can always tell when one is coming on. "I just get this overwhelming sense of -- they call it impending doom." Her labradoodle, Moose, starts alerting, licking her hands frantically.

"I'll feel like I'm being stabbed in the stomach, and then it gets hard to breathe and my throat and tongue start swelling. And we have to treat it really fast." 

On that particular day in March, multiple EpiPens didn't slow the reaction. The paramedics who arrived to take Brynn to Greenville Memorial Hospital, or "Hotel Greenville" as she likes to call it, knew her well. When she asked for her security blanket, they knew to hand her her smartphone.

"New day, new crisis," Brynn quips as she tells the story, as if it's about her first day of college or a shopping trip gone wrong. It might as well be. When you're allergic to life, a near-death experience is no big deal. 

Center of attention

Less than a week after her trip to the hospital, Brynn, 21, is back at home in Easley, South Carolina. She lies on her back, her head near the foot of her bed, chattering away as her mom changes the access to her chest port. 

Melissa Duncan, a paralegal by day, dons a mask and surgical gloves before disinfecting the area around the tube that's connected to Brynn's jugular vein. The disinfectant burns, and Brynn's blood pressure hits 150/102. Her heart rate rockets to 128. 

"The meds we have to give her to keep her alive, she reacts to," Melissa says, shaking her head. "Never in a million years did I think I would be doing this. "

Brynn was seemingly a normal kid -- until she wasn't. Yes, she was a fussy baby. Yes, she got sick often as a child, Melissa muses out loud -- but what kid doesn't? Brynn was also incredibly energetic, always the center of attention. Her father, Barry, jokingly rues the day she learned to talk. She started taekwondo at the age of 9 and had her black belt by the time she was 11. That was the same year doctors diagnosed Brynn with IBS, or irritable bowel syndrome. 

"She's always been --" Melissa Duncan pauses. 

"High maintenance!" Brynn fills in with a laugh. 

It wasn't until shortly before her 16th birthday in 2010 that Brynn had her first serious allergic reaction. The next two years became a blur of sick days and doctors' appointments.

Brynn saw specialist after specialist. The gastrointestinologist diagnosed her with gastroparesis, or partial paralysis of the stomach muscles. A cardiologist said she had POTS, or Postural Orthostatic Tachycardia Syndrome -- meaning that when she stood up for longer than a few minutes, her blood pressure dropped, leaving her light-headed and nauseated. A Wake Forest doctor diagnosed her with Ehlers-Danlos syndrome, a connective tissue disorder that causes fragile skin and overly flexible joints. 

After doing hours of research, Melissa, Barry and Brynn came up with their own diagnosis: mast cell disease. They found a specialist online, Dr. Lawrence Afrin, who at the time was working in Charleston. They waited nearly nine months to see him, but hearing him confirm their suspicions was life-changing.

Mast cells are the regulators of your immune system. They're the ones that release histamine when a bug bites, or when you come into contact with an allergen. They basically sound the alarm that lets the rest of your immune system know something is wrong.

Until recently, the only mast cell disease doctors had identified was mastocytosis, which is characterized by "abnormal proliferation and activation" of the body's mast cells -- meaning there are way too many and they act in strange ways. 

But in the last few years doctors such as Afrin have started to recognize that there are many different layers to mast cell disease. For instance, Brynn has mast cell activation syndrome, meaning her mast cells act strangely, but they're not growing in number. 

"It's like I'm living in a 24/7 allergic reaction," Brynn explains simply. 

Fruit, vegetables, milk, soy, nuts, smoke, perfume, the sun -- you name it, Brynn is allergic to it. But it's not really about the specifics; the allergens change depending on how "angry" her mast cells are that day, she says. On good days, she can eat small amounts of plain meat or mashed potatoes. On bad days, even using her feeding tube causes her extreme pain. 

Not everyone with mast cell activation syndrome has it as bad as Brynn does. "Oh God, no," Afrin says when asked. "No, no, no, no." 

But mast cells are located in your connective tissue, including your skin and the lining of your stomach and intestine. They can affect every system in the body, Afrin says, so the disease is capable of causing all the symptoms Brynn experiences.

You have to ask yourself, he says: "Is this poor patient so uniquely unlucky to have acquired so many different, independent problems? Or is it more likely that there is just one thing going on?"

Of course, having a diagnosis didn't make living with mast cell disease any easier. 

In 2012, Brynn was admitted to the hospital 30 times. She started having seizures and episodes of dystonia -- painful, violent muscle contractions that are "scary to see and scary to experience." On multiple occasions, doctors have had to put casts on her legs to prevent her joints from bending in the wrong direction.

"I've seen doctors and nurses step back, kind of like 'What is this?'" Barry Duncan says. 

Every time she went to the ER, Brynn was given a large dose of steroids to calm the inflammation. She's now steroid dependent -- and likely will be for life. 

"We could be here for days, and you still would not understand all the inner workings of Brynn and all of her medical issues," Melissa Duncan says. "But I think the underlying one is the mast cell disease, which is a beast, and continues to become a bigger beast, day by day."

 Living in a bubble

Brynn spent her 19th birthday in the hospital. An allergic reaction made her miss a zip lining trip for her 20th. On December 31, her 21st birthday, when many young adults would be out celebrating the legal drinking age with friends, she was at home still recuperating from Christmas. She had joined the holiday festivities by eating a special pizza -- made with fake bread and fake cheese. 

"It's nasty," Barry Duncan says with a laugh. "It's the worst pizza you've ever tasted." But "for her, the worst pizza you've ever had ... tastes really good."

Brynn dreams about real stuffed crust pizza sometimes. And mozzarella sticks. Occasionally she lets her spunky attitude drop, and you see that she understands the effect her illness has on those around her. 

Her parents have spent weeks sleeping in cramped hospital chairs. Her younger siblings have missed vacations and school ceremonies; they've learned how to inject Brynn with an EpiPen, and how to hold her limbs still during a dystonia episode. 

"There's a lot of guilt that goes along with having a chronic illness," Brynn says. "You feel like a burden. And people can tell you you're not, but no matter what, in your head, you feel that you are."

She has moments when she gets jealous of her high school friends who are doing all the things she can't -- attending college, moving out, finding boyfriends. She and her new friends, others with chronic illnesses she met online, have a saying: "Single and ready to mingle -- as long as you have good health insurance."

And with a giggle, the dark moment passes. Skyping with her friends keeps her spirits up. She's prolific on Instagram, with more than 5,300 followers, and writes regularly on her blog, which is called "Brynn's Bubble." 

"A lot of people with this disease ... do, in a sense, have to live in a bubble, because it's really difficult to get the symptoms under control," Brynn says. "You spend a lot of time alone. And it can be very isolating. But thanks to social media, I haven't felt alone."

Over the last two years, Brynn and her family have made progress in managing her disease. She was one of the first patients in the nation to be put on a continuous IV of antihistamine. Intravenous immune globulin, or IVIG, therapy, when a healthy donor's plasma is used to boost a patient's immune system, cut in half the number of drugs she needs. 

Of course, she still needs a lot -- a compounding pharmacy delivers a box to her house once or twice a week. The meds make her brain foggy. She punctuates conversations with "Where'd that thought go?" But that doesn't stop her from talking. She plans to keep talking until mast cell disease receives the attention she feels it deserves. 

"'You don't look sick' -- that's one of the comments that I get a lot. Or they say, 'At least it's not cancer,' and that's another hard one, because these illnesses can be just as devastating," Brynn says. "The difference is they're not understood. And the only way to change that is to somehow bring awareness to it."

Early in her taekwondo career, Brynn's instructor told her that she could win a match before it even began -- just by staring down the opponent. She plans to fight mast cell disease the same way.