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Bald Is Beautiful

In a society which equates health and attractiveness with hair, these three alopecia crusaders are proving that baldness can't stop anyone from living a happy life.

The summer after fistfuls of Rosie Quinn’s brown locks started falling out onto her princess pillowcase, she went to the park with her parents. Her mother, Paula Quinn, left Rosie’s pink Chicago Cubs baseball cap at home. It was a turning point.

When Rosie was first diagnosed with alopecia universalis—an autoimmune disease in which the immune system attacks hair follicles—at age 3, Paula and her husband, Larry, scrambled to find a cure. They wanted to bring her hair back. They read medical journals, scoured the Internet for a solution, tried creams, steroids, herbal medicines and special diets. In their Chicago home, Paula scrutinized Rosie’s scalp daily with her iPhone flashlight for signs that a hair was starting to push through; it never did.

One day early on, Rosie, now 7, came up to Paula. “Mommy, don’t worry, it’s just hair, it’s just falling out,” she said. “And I said, ‘you’re right,’” Paula said.

“Mommy, don’t worry, it’s just hair, it’s just falling out,” she said. “And I said, ‘you’re right.”

Soon after, Paula and Larry sat down one night after Rosie and her younger sister went to bed. They decided to pivot to what they could control, building Rosie’s confidence, and to stop covering up her hair loss. It was a path they called “no secret, no shame.”

“We shifted to raising a little girl who loves herself unconditionally,” Paula said. Leaving the pink hat behind was a first step. “Rosie ran to slide, bald, oblivious to the significance of the day,” said Paula.

What Happens When You Have Alopecia

Like many others living with alopecia—there are several types, and those with alopecia universalis lose the hair on their head plus their face and the rest of the body—Rosie and her parents have had to come to terms with society’s perception of having no hair. Healthy locks have long been tied to health, youth, and even one’s sexual identity. For those with alopecia, moving past these perceptions can be a challenge.

At 3 years old, Rosie would get sympathetic smiles at the grocery store. Kids pointed fingers, parents shushed them. “Don’t stare,” they said. The worst was when people assumed she was a boy. After “Hey little guy, how are you today?” or “Good scootering buddy!” Rosie ended up in tears. The Quinns started encouraging her to wave to curious onlookers and introduce herself to make the encounters less awkward.

“My hair’s on vacation,” she’d say. In Starbucks, she marched up to bald men and told them, “Did you know you’re bald like me? We’re twins.”

“Her confidence caught people off guard,” Paula said, “and got her smiles wherever we went.”

Rosie Quinn and her mother Paula.

The Quinns started spending more time with friends that loved Rosie and focused on activities she enjoyed—and was good at—like painting. Then, one day the Quinns surprised Rosie by turning one of her paintings into a headscarf she could use on days she just didn’t want to hear people comment about her head. Wearing the scarf shifted the conversation to Rosie’s art and her skills instead of her baldness.

Rosie wanted all bald kids to have that same experience. She urged her mom to help. Soon after, Paula left her job at Google to start a non-profit, Coming Up Rosie’s. It produces headscarves and superhero capes from original artwork for people struggling with baldness and any other difference.

“We’re using this difference to help other people, which has helped Rosie’s confidence,” Paula said. So much so that at a recent alopecia conference, Rosie spoke before an audience of several hundred attendees.

What Is Alopecia

For Ebony Jean, 27, of Jackson, Michigan, her turning point came on social media.

Jean found out she had alopecia universalis when she was 4 and her hair started coming out in clumps. To cover up her bald spots, her mother sewed her hats that matched her outfits. “I remember being on the school bus, and I was sitting by myself,” Jean said. A couple of boys behind her yelled “Snatch her hat off” and they tossed it back and forth the whole way home. “It was heartbreaking,” she said. “I was just crying my eyes out.”

At 9, she lost almost all her hair. Her mom shaved her head and started making her headband wigs. “It was therapeutic for her,” Jean said. “She couldn’t make my pain go away, but she did what she could.” Jean wore wigs into her teens and twenties.

 

If Grace Jones had alopecia, she’d be Ebony Jean.

She started talking publicly about her condition two years ago at The National Alopecia Areata Foundation’s annual conference. She posed bald in a powerful stance and shirt printed with “What is Alopecia” and posted the picture of herself on Instagram and Facebook. The next day, her Facebook post had almost 1,000 likes and 60 shares.

“I was so overwhelmed with all the love and support people showed me,” she said. “I’m so grateful for that picture. That moment of releasing myself.”

Subsequent notes of support from strangers with alopecia from across the globe emboldened Jean to venture outside without a wig. NBA veteran Charlie Villanueva, who also has alopecia, reposted her picture on his social media. Since then, Jean has received dozens of photos from people with alopecia who said her confidence inspired them to go without a wig.

“People respect you more if you’re vocal about what you’re dealing with,” Jean said. “A lot of people told me, ‘I absolutely love you without the wig. I want my freedom to inspire other bodies to be free.”

Since then, Jean ventures out more without a wig, but still wears one to work, at Sephora. “I’m just not ready to go work without a wig,” she said.

Men Get Alopecia Too

Tyrone Folliard-Olson, left, came down with alopecia arata when he was just 14.

Tyrone Folliard-Olson, 34, an attorney in Minnesota, struggled for years to get his hair back. One treatment included getting 100 steroid injections in his scalp.

He was diagnosed with alopecia areata when he was 14 and his barber noticed a bald spot. For Folliard-Olson, keeping a sense of humor about his condition, finally shaving his patchy head, and ceasing scalp treatments, liberated him.

“I always said I was one of the youngest people I know to have a comb over,” he said.

Folliard-Olson was lucky not to have been bullied in school. In his early twenties in law school, he wore hats to class, often drawing looks. “It was awkward,” he said. Finally, he decided to shave his head. But it wasn’t an easy decision.

“Society places so much emphasis on hair as it relates to beauty and attractiveness,” he said, “and hair gets so intertwined with our self-confidence and our notions of self-worth. For me to imagine myself as bald was an incredibly difficult thing to do.”

“Society places so much emphasis on hair as it relates to beauty and attractiveness, and hair gets so intertwined with our self-confidence and our notions of self-worth.”

Cutting his hair off, however, felt like cutting away the negative emotions intertwined with it, he said, the worry, the anger, the feelings of unattractiveness and helplessness. “Once it was shaved, it felt like a massive weight was lifted off my shoulders,” he said.

A few years later, Folliard-Olson’s eyebrows and eyelashes started falling out. “That was even more devastating,” he said. “You don’t realize how much eyebrows frame your face until you lose them. It shatters your self-confidence. It was a dark time for sure.”

He decided to pursue treatment for his eyebrows—getting monthly shots—but leave his head alone.

Baldness Can’t Stop You

Rosie Quinn isn’t going to let alopecia stand in the way of growing up to be anything she wants to be.

When Paula Quinn asks Rosie what she wants to be when she grows up, she says a supreme court judge. Rosie has asked Paula if there could ever be a law keeping bald people from being a judge. “I tell her, ‘no honey, your baldness will never stop you from doing anything.’ But look at our society,” Paula said, “it’s hard.”

Plenty of women with alopecia work as lawyers, Paula said, but in the courtroom, most wear a wig. “Rosie’s going to go through times,” she said. “She might want to wear a wig one day. We’re letting her drive this. In our world, there is this emphasis on external beauty, but we’re really trying to sell this inner beauty thing.”

Features

Is Medical Crowdfunding Really The Answer To A Broken Healthcare System?

These three stories of individuals who used crowdfunding to raise money to pay their medical bills show that sites like Indiegogo are just one piece of the puzzle when it comes to navigating the system.

Life with a health condition can be a stressful journey, but financial woes can make it harder. In a broken health care system in which few people can truly afford to be chronically ill, many patients have to get creative. That’s why many Americans are turning to crowdfunding—raising money on the Internet using social media for promotion–to pay their health care costs, with middling success. According to Business Insider, half of all funds raised on crowdfunding platforms like Indiegogo, YouCaring and GoFundMe are used for medical costs,

Lost in the greater debate about whether healthcare crowdfunding is evidence of a broken system or innovation in action, though, are the personal stories.

Shelley Simmonds.

Fraser Simmonds was born with a rare life-limiting condition called Duchenne Muscular Dystrophy, a genetic degenerative muscular condition which over time causes muscles to waste away and die currently has no cure or treatment options. Although the Simmonds family lives in the UK, which has free healthcare through the National Health Service (NHS), not all of Fraser’s expenses were paid for: for example, the powered wheelchair he needed to socialize independently with other kids, which was not considered a “medical requirement.”

The family eventually launched a GoFundMe campaign for essential care for Fraser. And they’re doing their part to pay it forward: the family now regularly organizes charitable events to raise money for a treatment for Duchenne.


Fraser’s Mom, Shelley, explains that it wasn’t easy for the Simmonds to turn to crowdfunding. The family was always financially independent before Fraser was born, and it was hard for them to ask for help. “Having a disabled child is a huge financial worry,” she says. “People do not always understand what little financial help is given to those that genuinely need it. I would do whatever it takes to give Fraser the best in life so sometimes you have to put your pride aside.”

Yet because he lives in the UK, Fraser Simmonds is one of the lucky ones, whose medical costs are still mostly paid for by the NHS. Here in the US, though, the generosity of strangers on crowdfunding platforms can be the difference between life and death.

Amongst other ailments, Linda Ruescher lives with lupus, a chronic autoimmune disease that affects 1.5 million people in the U.S. alone. At age 64, just three months before being eligible from Medicare, Linda lost her insurance and developed a pulmonary embolism. A life-saving hospital visit left her with an astounding medical bill of $130,000, as well as out-of-pocket prescription bills that cost over $2,100 a month.

People do not always understand what little financial help is given to those that genuinely need it…

Although Linda returned to work just six days after her hospital visit, those costs were unaffordable. “I had to choose between a roof over my head and food in my belly or the medication,” she says. “I just needed to hold on three more months until I qualified for Medicare. I was sick, exhausted and terrified of being homeless,” she says. Crowdfunding was her only option, and after a social media push from her friends and family, she reached her crowdfunding goal. But it didn’t come without a personal cost. “Asking for help struck at the core of my identity,” she says. “It represented a loss of independence, a loss of ability to support myself and my needs, and even worse, it forced me to recognize and face the severity of my health condition.”

What also gets lost in the debate around healthcare crowdfunding is that money alone can’t solve many of the problems that people with chronic health conditions face. When Nicholas Emerson’s hardworking father died from a rare and aggressive form of Non-Hodgkin’s lymphoma in 2016, his absence as the sole provider for the family was sorely felt. Nicholas and his sister set up a crowdsourcing page to try to alleviate some of the strain. They met their goal, but found that money alone couldn’t fill the hole that had been left in their family.

Linda Rueschler used crowdfunding to pay her bills after a sudden embolism.

“Crowdfunding sites help to pay the bills but that’s only one aspect of care that’s needed,” he says. “Such sites can never do enough to help with all the other time-sensitive, rapidly-changing, emotional, psychological, and physical needs involved [in a sudden health emergency] that, unless you’ve gone through your own version of this, you will never fully understand.” That’s why he created Supportful, a platform that allows families to crowdsource the tangible acts of support they need from their friends and families, like fundraising, meals, gifting, volunteering, and more.

There are no universal panaceas to navigating the complicated world of chronic illness, and crowdfunding is no different. Even if you can raise the money you need through crowdfunding your medical expenses, it can only help ease the burden of having a condition touch your life, not cure it completely. Until our system evolves enough to meet the full spectrum of needs a person might face on their healthcare journey, crowdfunding will only be one piece of the puzzle.

 

Features

Doctors Who Craft

Across the country, off-the-clock medical professionals are turning to knitting, baking, painting, lettering, and other crafts not just for fun, but to doctor their souls.

At 35 weeks pregnant, Priscilla Sarmiento Gupana rushed to her local hospital with swollen legs and stomach pain. Severe preeclampsia, said her doctor, who ordered an emergency C-section. Twenty-four minutes after she delivered her baby, Maxwell James, her doctor pronounced him dead.

Pediatrician Priscilla Sarmiento Gupana turned to baking after the tragic death of her newborn son as a method of coping.

Sarmiento Gupana, a pediatrician, was shocked to learn Maxwell had a rare and fatal genetic blood disorder, Hemoglobin Bart’s disease. In the weeks and months following his death, she found comfort in handmade gifts she received from medical school friends. Years earlier in med school in New Jersey, the friends often met up for crafting nights as a way to decompress from their studies. A knit prayer shawl, a necklace with angel wings engraved with her baby’s name lifted Sarmiento Gupana up as she grieved.

“When people make things with their hands, it’s more than the object you get,” she said. “It’s the process and love and time that go into it.”

A baker since age 7, and an avid knitter, Sarmiento Gupana found that creating her own art also helped her heal. Now, nearly seven years and two healthy children later, she still finds solace in creating. Sarmiento Gupana makes intricately decorated cookies, many with a medical theme–an anatomically correct spine, a brain, a kidney–for fellow physicians, family and friends of friends. Her cookies rival those made by professional bakers. It’s a pastime she uses to manage the secondary trauma she faces as a pediatrician working in an underserved community in Aurora, Ill. And she’s not alone.

Across the country, women working high-profile, high-stress jobs in medicine are finding a haven and creative outlet in professional-quality crafting…

Across the country, women working high-profile, high-stress jobs in medicine are finding a haven and creative outlet in professional-quality crafting, making items like specialty soaps, cupcake bouquets, and mosaics out of test tube tops. Thousands have banded together in a Facebook group, Physician Mom Crafters. Many say crafting has also helped their medical practice.

Crafting is my therapy,” said Nora Hanna, a child psychiatrist in private practice.It’s something to look forward to. It gets me through a long day.”

Some of Gupana’s medically-inspired cookie designs.

Hanna’s chosen art form: hand-lettering, a modern style of calligraphy she uses to create handmade cards. But she also dabbles in jewelry making. In her home outside Atlanta, Hanna stockpiles pens, pencils, paper, and stamps. In her previous job at an extended day program for foster children with mental health issues, she used crafting to connect with kids. She helped program participants make jewelry to give as gifts and scrapbooks that told their life story.

“I encourage kids, and especially those who are anxious or pick at themselves, to learn how to knit, crochet, or do origami, to channel that nervous energy into something else,” she said.

For Sharron Mason, an MD who practices addiction medicine in Hot Springs, Arkansas, her “Crayola art” gives her an entry point with patients. She creates colorful, soothing works of art using crayons she melts on canvas and then manipulates with a hairdryer. One work in teal and green reminiscent of the ocean hangs in her office.

Sharron Mason hard at work on some of her ‘Crayola Art’

Mason, a single mom who worked multiple jobs before enrolling in med school in her forties, had to get creative during the holidays when her kids were young and money was tight. The family’s Christmas ornaments were DIY. “For $2, some spray paint, pecan shells, twigs, and ribbon, you can have a beautiful tree,” she said.

Years later, what began as a project to create a painting to hang in her living room morphed into a side gig and passion project. She’s taken over the guest room in her home as an art room and sells pieces to local businesses, friends, and acquaintances. She also donates works to the Christian music industry.

“I have to craft because working as a doctor is very stressful,” Mason said. “You’re taking on a responsibility for peoples’ lives. Sometimes those lives are very hard and sad and you take it home with you. When I get home, I put on my Christian music, I turn it up loud, and I start crafting.”

“Crafting is my therapy.. It’s something to look forward to. It gets me through a long day.”

Sue Summerton, a radiologist in Philly, makes works of art from recreations of X-rays that look like letters of the alphabet. She makes X-ray posters and signs for doctor’s offices, including her own, for friends and for people around the world who find her online. The U in her artwork is her own colon. She uses a recreated image of an eyeball for an O; a series of gallstones in a row make the letter J.

Radiologist Sue Summerton crafts X-Ray inspired art to help relieve stress.

I really enjoy the process of creating,” Summerton said. “People come into my office afraid to see what I’ve found on their mammogram. This takes away a little bit of that fear and anxiety. Creating something that can be a positive part of people’s lives is a gift for me.”

When tragedy or illness strikes the women’s online crafting community, they join forces to support each other, making a care package of handmade items to send the member in need. Sarmiento Gupana once baked up a batch of breast-themed cookies for a fellow group member’s “Bye Bye Boobies” party ahead of her mastectomy. She’s also made cookies for grieving parents of children who’ve passed away.

But plenty of her projects are just plain fun. Recently she made nurse hat cake pops for her nursing staff, whimsical ball-of-yarn cookies for a yarn store owner, and scaly mermaid tail cookies for a friend’s teenage daughter’s birthday. Next on her list: pancreas and gastrointestinal tract cookies.

“They’re silly sugar cookies, but they’re so much more than that,” Sarmiento Gupana said. “Crafting has been an outlet for me. It’s a cool intersection between my work life and my creative life and a way for me to stay focused. Baking is a physical representation of love and care and effort. And really, body part and anatomy cookies are just cool.”

 

 

Features

When Diagnosis Leads To Entrepreneurship

Spina bifida, Parkinson's Disease, and Type-1 Diabetes. For these three entrepreneurs, their conditions were what launched them on the path of business success.

Some give into fear and uncertainty after a medical diagnosis. Others treat it as a call to action, reveling in the resilience, empathy, and creative problem-solving skills they’ll need to develop as they navigate life with a chronic medical condition.

It’s not too different, when you think about it, from the traits entrepreneurs need to develop to survive.

The CEO Who Wanted To Gamify Rehab

Just ask Scott Kim, who’s now CEO and cofounder of NEOFECT USA, a company that creates smart rehab products. Unlike most kids growing up in South Korea, Kim wasn’t allowed to learn Taekwondo. Kim was born with spina bifida, a condition where the spinal cord does not develop or close while in the womb. While other kids took Taekwondo, he spent countless hours in rehab from about the age of six to ten.

Scott Kim’s experience with spina bifida inspired him to create the RAPAEL Smart Glove.

“The biggest problem to me, besides the outdated facilities and tools [available to kids with spina bifida in South Korea], was I found it very boring and I wasn’t sure if I was progressing or not,” he says.

Fortunately, Kim did progress to the point where he was able to start playing sports with his friends at around 12 and 13. He even eventually started playing soccer competitively. But he never forgot the experience of having to sit on the sidelines, and when he went to the University of Virginia, where he earned an MBA, he focused on ways to improve the rehab experience for sports-loving kids like him.

What if they could gamify rehab to quantify progress and actually make it fun? He visited rehab clinics to hone his idea. “To my surprise, the rehab facilities that I saw in the United States in 2010 was not too different from the clinics I used in the early ’80s in South Korea,” Kim says. “A lot of things still look very analog. It doesn’t look very exciting. Doesn’t look like it measures the progress.”

To my surprise, the rehab facilities that I saw in the United States in 2010 was not too different from the clinics I used in the early ’80s in South Korea.

That’s why, in 2015, Kim’s company launched the RAPAEL Smart Glove for hand rehab. “Once you put it on your hand, it becomes a controller, so you can play games with the glove on at the same time you’re going through the rehab process,” Kim explains. Games include tasks like squeezing an orange, catching a baseball, throwing darts, or pouring wine.

Eighty percent of NEOFECT USA’s customers are stroke victims, according to Kim. “Others are traumatic brain injury or spinal cord injury patients,” he adds. NEOFECT sells its products to clinics including Stanford Healthcare and the Department of Veteran Affairs, as well as direct to consumer. “Our hope is that we can help people get access to the rehab tools at home so that they can get better,” Kim says.

The Woman Who Wanted To Make Type 1 More Fashionable

Carolyn Jager, founder of Sugar Medical

Carolyn Jager, founder of Sugar Medical, a line of fashionable and functional bags for diabetes supplies, also drew business inspiration from her youth. As a style-conscious teen who was diagnosed with type-1 diabetes at age 13, Jager didn’t like carrying around the ugly black medical bags that came with her glucose meter, so she’d make her own bags or have her mom make some for her.

Flash forward a few decades. After leaving a job as a buyer for Macy’s, Jager was looking for a new project. A family friend needed a pancreas transplant due to complications related to diabetes, an incident that served as a wake-up call for Jager. “It scared me quite a bit,” she says.

Jager launched her business in 2009. “I’m not a scientist or anybody who can cure diabetes,” Jager says. “But I could make improvements in how [people with diabetes] carry their glucose supplies and avoid complications that arise from poor glucose control.”

We’re offering the public a better way to carry supplies without people asking ‘what is that?’ This is a line of bags that no one would think are a medical bag.

Sugar Medical bags aren’t just pretty; they’re also practical. Jager points out that a bag with a bright teal stripe or a big purple butterfly is easier to spot in the bottom of your gym bag or across the room.

Plus, the bags include a built-in receptacle for glucose test strips that otherwise wind up everywhere. “There’s a vinyl-lined compartment which you can wipe out and clean,” Jager says. “It can hold up to 200 test strips. It’s not necessarily the diabetic who finds in the best feature; it’s the family members who don’t have to pick up strips all over the house.”

A look at Sugar Medical’s line of fashionable diabetes kits.

In addition to selling to consumers online, the 5-person company now has a licensing agreement with an insulin pump manufacturer, and the bags are included in a care kit provided to people who are recently diagnosed with type-1 diabetes. “We’re offering the public a better way to carry supplies without people asking ‘what is that?’” Jager says. “In the Type 1 and Type 2 diabetes community, there are a lot of individuals who are sensitive to being labeled as “diabetic” and are embarrassed to carry their supplies. This is a line of bags that no one would think are a medical bag.”

The Shoe Maven Facing Parkinson’s In Heels

Meanwhile, Tonya Walker received her diagnosis in adulthood, but like Jager and Kim, she used the experience as an impetus to make an impact on other patients and their families.

Starting around 2006, Tonya Walker noticed that her left arm didn’t swing when she walked, and had also lost dexterity. Two years later, the Florida mother, then 34, was diagnosed with Parkinson’s disease. “My husband and I went to the doctor together, and we didn’t talk about it the whole way home,” she recalls. “Really, we didn’t talk about it for five years. We basically chose to ignore it. I think I was living in denial. I didn’t tell anybody except for my immediate family.”

Walker loved high heels but Parkinson’s messed up her balance, so she could no longer wear them. Then in August 2013, Walker had her first brain surgery and her balance improved to the point that she could dust off her high heels. “We decided to start a fashion and shoe blog and use it as a platform to raise Parkinson’s awareness,” Walker says. “When society thinks of a person living with Parkinson’s, they don’t envision someone in their thirties.”

Tonya Walker, who has Parkinson’s, started the Show Maven to prove that fashion transcends illness.

The Shoe Maven launched in 2014, and has two main audiences, according to Walker. For people who don’t have first-hand experience with Parkinson’s, she says “they see fashion and may not even realize I have Parkinson’s.” Then as they read her bio or dig deeper in the archives, they might learn about her diagnosis and about the disease.

The other audience is people with Parkinson’s, especially with young onset Parkinson’s like Walker. “They can go to my blog see that I’m living a joyful, happy life with the disease,” Walker says.

The blog is mostly a passion project, but it has helped Walker raise money and open doors to other opportunities. For instance, she sold T-shirts called TSM Originals and donated $5 from the sale of each shirt to the Michael J. Fox Foundation for Parkinson’s Research. She also organizes an annual fundraising event called Art of Fashion in collaboration with local fashion boutiques, museums and galleries.

Walker’s online presence as a blogger has led to speaking engagements with pharmaceutical companies and community organizations. She also shared her story during the World Parkinson Congress in 2016 in Portland, Oregon. As Walker works towards higher-profile gigs as a motivational speaker, she says, “I don’t want other people to feel like they have to live in denial or secrecy.”