By Ellyn Pak Photographs by Eric Sueyoshi
The symptoms first appeared during Kam Redlawsk’s junior year in high school. Fatigue hit the varsity soccer player more often. Her gait became wobbly. And she was suddenly having trouble climbing stairs.
Something drastic was happening to her body. “It is a bizarre situation,” recalled Redlawsk. “One day you are running and the next day you’re not.”
But the teen’s doctors couldn’t offer any clear-cut answers. Soon after Redlawsk graduated in 1998 from Anchor Bay High School in New Baltimore, Mich., she visited a series of local hospitals, saw neurologists and sought advice from doctors at the University of Michigan’s hospital in Ann Arbor.
While some doctors said she displayed symptoms of multiple sclerosis, a degenerative disease of the central nervous system, others diagnosed her with polymyositis, an inflammation of muscles, and had her on steroids for a year-and-a-half.
Meanwhile, a rare disease continued to eat away at her muscles, first attacking her legs and then spreading to her arms, hands and neck. Redlawsk, who by then was studying automotive design at the College for Creative Studies in Detroit, felt increasingly weaker and began using a cane.
Finally in 2004, a visit to the Mayo Clinic in Minnesota provided answers. During her final year in college, Redlawsk was diagnosed with Hereditary Inclusion Body Myopathy (HIBM), a group of rare, incurable genetic disorders that causes progressive muscle deterioration and weakness.
By then, Redlawsk had received so many different diagnoses that the final one wasn’t devastating.
“Well, OK, what do I do now?” she asked her doctors.
The problem: There was no cure and little information about the disease, which is estimated to affect 1,000 people worldwide. Doctors predicted Redlawsk’s muscles would continue to deteriorate and possibly leave her severely disabled. Most patients with the disease are confined to a wheelchair within 10 to 15 years. Redlawsk was encouraged to quit college and start using a wheelchair.
Neither were options. Instead, she graduated in 2005 with a degree in industrial design, and wore braces on her calves to keep her feet stable so she could continue walking.
A year later, Redlawsk moved to Los Angeles and landed a job at Mattel, where she currently works on designing games and toys, including the company’s recent Speed Racer collection. The disease still significantly disrupted her life, and Redlawsk searched for more information about treatment. She finally stumbled upon the story of the Darvish brothers, both doctors with HIBM based not far from her apartment in West Los Angeles.
In 2000, Bob and Daniel Darvish founded Advancement of Research for Myopathies (ARM), a nonprofit organization in Encino, Calif., that raises funds for research, provides support for HIBM patients and spreads the word about the disease. At the time, the organization worked primarily with members of the Iranian Jewish community, where the disorder is more prevalent and those diagnosed are even stigmatized.
The Darvish brothers, diagnosed with HIBM in their late 20s while in medical school, were stunned when Redlawsk reached out in July 2007. “We’re surprised when any patient contacts us because we’re dealing with such a rare disease,” Daniel said.
The doctors conducted genetic tests on Redlawsk, a Korean-born adoptee, and confirmed that her birth parents were carriers of the gene mutation and passed on the disease to their daughter.
Redlawsk, who was adopted at age 4, knew nothing about her biological parents except that they had abandoned her at a hospital in Daegu, South Korea. Born with a cleft palate, Redlawsk also contracted measles and chicken pox when she was a month old. After recovering in the hospital, the infant was taken to an orphanage where she lived until she was adopted by Rodney and Sandra Redlawsk of Chesterfield, Mi., in 1983.
As a result of her diagnosis, and also after meeting more Koreans than she ever had before during college, Redlawsk said she felt a growing desire to reconnect with her birth country. So in 2003 she traveled to Korea. During her trip, she visited Seoul and Wonju, but a typhoon prevented her from visiting the orphanage in which she was raised. Still, the trip was transformative. Redlawsk felt an innate connection to Korea and didn’t want to leave.
“I don’t usually categorize myself as an ethnic group, or any group for that matter, but I definitely felt some sort of connection,” recalled Redlawsk. “It was unexpected and I can’t describe why, but I felt like I was visiting a part of myself.”
Redlawsk has not yet taken steps to find her birth parents, though knowledge of the fact that they were carriers of the HIBM gene mutation has made her more curious about them. She sometimes wonders if they know she has this disease.
***
Redlawsk’s meeting with the Darvish brothers became more than a diagnostic visit. With her design experience, Redlawsk offered to put together for free a media campaign for ARM that included a new logo, brochures, templates, a documentary and a website. Her involvement, as creative director and member of the board of directors, would help the organization broaden its reach beyond the Iranian community and put a different face on a disease that has also affected those of Korean, Japanese, Middle Eastern and African descent.
Since her exposure, a number of HIBM patients have contacted Redlawsk with their stories. Redlawsk’s objective from the beginning was to let patients know that it was healing to talk about their experiences and that ARM would be there to spread their message. “I see my experience as a way to help and talk about it as much as possible,” she said. “What’s the alternative? Get worse and not say anything?”
This month, Redlawsk has plans to visit Tokyo and Kyoto to meet a cluster of HIBM patients. She has yet to hear from another patient of Korean descent and, in fact, has been told she is the only known Korean in North America diagnosed with the disease.
Spreading word about the disease and finding other patients is crucial to getting the attention of medical professionals and companies with research funding mechanisms. HIBM is considered an “orphan disease” because researchers and pharmaceutical companies find little reason to invest resources in such a rare disorder.
“She is certainly a positive role model when it comes to this,” said her boyfriend Jason Hazelroth. What drives Redlawsk, he says, is her empathy and inability to just sit and do nothing.
Daniel Darvish refers to her as an inspiraton and a branch for his organization to reach other people with the disease, especially Asians.
Meanwhile, with no options of treatment, medication or physical therapy, Redlawsk’s health continues to deteriorate. HIBM patients have a range of outcomes; some in their mid-50s are bedridden, while others are wheelchair-bound with abilities to talk, eat and use the bathroom on their own.
“I just feel weak, tired and soreness because of the way I have to compensate,” said Redlawsk, now 29. “I feel my mind and drive are a lot faster than when I’m moving. I hate being dependent on people.”
Excessive physical activity, including running, could damage muscle tissue irreversibly. The weakened muscles in her legs make her walking gait wobbly and unstable, and the slightest sidewalk imperfections can send her off balance.
“I’m aware I have limitations, but limitation is a funny word,” she said. “Physically, it’s harder … but it’s been very eye-opening.”
There are many days when Redlawsk struggles with the disease. Mundane tasks like uncapping a tube of toothpaste, typing or rolling over in bed have become much more difficult. Sitting, standing, sleeping and walking have become uncomfortable, and at times painful. When she falls down, it can take her up to an hour to get back up on her own. “You lay there and think, ‘This is so sh-tty,’” she said. “Even that’s a big ordeal.”
Coping emotionally with the disease can be even tougher because the disorder is progressive and affects the patient slowly. Those with HIBM are constantly trying to adjust with the changes that occur in their bodies, Redlawsk said. Even her family members in Michigan, which include her parents and three brothers Cole, Ryan and Josh, have a hard time fully grasping the disease and its effect on her body.
Strangers, for the most part, are willing to help her when she stumbles or takes a fall in public, though some are left bewildered. She recalled how one first-generation Korean woman working at a gas station in Los Angeles hunkered behind a cash register when Redlawsk fell to the floor and called out for help. The woman ignored her. Redlawsk then dragged herself up from the ground. She didn’t say anything to the lady, but never returned to the business.
“During those moments of hardship, I am caught off guard and it feels like I am being told for the first time that my body is deteriorating,” said Redlawsk.
The petite woman, whose leg braces and cane support each painful step, misses being able to have a pick-up-and-go lifestyle that doesn’t require planning out her steps throughout the day. She misses running, jumping and expressing herself through her body.
Her boyfriend, whom Redlawsk has known since college, has become her emotional and physical support system. Hazelroth, 28, is also a Korean-born adoptee from Michigan who has seen Redlawsk’s health decline over the years. A concept artist who designs video games for Pandemic Studios, he has increasingly taken a larger role in helping his girlfriend with everyday activities, including climbing stairs. “I’ve made it clear that I’m here to make it more comfortable,” he said.
Further deterioration could put Redlawsk in a wheelchair, but she’s optimistic that she’ll continue walking and participate in clinical trials for treatments at the National Institutes of Health in Bethesda, Md. The first phase of trials, which includes pre-clinical toxicology studies, could begin next summer if $1 million is raised to fund it, according to Daniel Darvish. The entire trial could cost up to $20 million. ARM plans to unveil an online Dollar Campaign so that supporters can donate money and keep track of progress. Redlawsk credits the organization with financing research that has sped up the timeline for clinical trials for several therapies.
“I’m perfectly aware that I might never see that cure,” said Redlawsk.
For her part, Redlawsk said she will continue using her design background to spread the word about HIBM. And although her future health is uncertain, that does not keep her from making plans for it and dreaming of the possibilities. She and her boyfriend hope to get engaged this year and talk about adopting children one day.
“I don’t consider that my life needs to stop because of HIBM,” she said. “If anything, I need to do more. I try to be as positive as possible because that is the only situation I can control.
“I also don’t want to give the impression that it is not extremely difficult. With that, some amazing things have happened as a result and amazing doors have opened. And I am truly thankful for those moments.”
In his Manhattan office, Dr. Edmund Kwan performs eyelid surgery on a female patient.
By Kai Ma
Hope always wanted bigger eyes. The 26-year-old Korean American was born without a fold, and her small, almond-shaped brown eyes always bothered her. Make-up didn’t help, and as a teenager, she even taped tiny slices of clear Scotch tape on her lid to create a temporary fold. “It was that one, nagging thing I didn’t like,” says Hope, who lives in a suburb outside of Seattle. “It wasn’t an issue of not wanting to look Asian at all. I like my overall look and I like who I am.”
Tracy, a Korean American based in Chicago, echoes the sentiment. “I wanted a nose job because unfortunately, I was born with a nose that looked squished at birth,” says Tracy, who is 32. “It was flat and unattractive. I wanted to improve my appearance. [People of] other races do it all the time. So why can’t I?”
Both Hope and Tracy, who asked that their last names not be published, pursued plastic surgery, and are now more than satisfied with their newly-constructed features. Hope’s eyelid fold, which she describes as “natural looking,” renewed her self-confidence. Her face, she says, looks “more open and energetic.” Tracy’s nose “has a more graceful shape, but it’s still an Asian-looking nose. Not everyone noticed the change, but I do. And I feel good about it.”
According to the American Academy of Facial Plastic and Reconstructive Surgery, the world’s largest association of surgeons who focus on the face, head and neck, there’s been a 27 percent increase in cosmetic surgery since 2000. AAFPRS-certified surgeons reported performing an average of 789 facial cosmetic and reconstructive procedures in 2007. Cosmetic surgery has also boomed in Asian countries, especially in South Korea, where plastic surgeons are plentiful and procedures are affordable.
Yet plastic surgery, especially among ethnic minorities, has long touched a nerve. Though procedures are becoming increasingly common among all ethnicities, many believe that minorities who go under the knife are attempting to erase their ethnic features.
According to 2007 statistics by the American Society of Plastic Surgeons, the most commonly requested surgical procedures among Asian Americans were nose-reshaping, breast augmentation and eyelid surgery, and among minimally invasive procedures, Botox, injectable filters and chemical peels. Last year, 767,806 Asian Americans underwent cosmetic surgery, and in a breakdown of patients by ethnicity, Asians represented 7 percent, up from 6 percent in 2006.
An AAFPRS survey released in February also indicated that among all racial groups, Asians are the most likely to receive eyelid surgery, also known as blepharoplasty (39 percent), though the least likely to receive a facelift (4 percent).
For decades, eyelid surgery has been a hotly-contested issue in the Asian American community. The arguably dangerous procedure has been linked to identity politics and the history of racial self-loathing among minorities in the United States. But does a Korean woman who wants bigger eyes, a pointier nose, and larger breasts imply that she wants to look less Asian?
“Absolutely not,” says Dr. Edmund Kwan, a plastic surgeon in New York City.
“It’s a total misconception that plastic surgery [on Asians] caters to a Westernized look. That could’ve been partly true 30 years ago, but is certainly untrue today.”
“This isn’t about race,” says Hope, of her beloved folds. “I just wanted to look better, and I happen to be Asian American. I don’t think there is anything wrong with that. That doesn’t make me self-hating or white-washed.”
“It’s personal, not political,” adds Christine, a 29-year-old New Yorker who received a blepharoplasty from Kwan last year, and more recently, a non-invasive nose procedure that raised the height of her nasal bridge. “But for sure, there are women who go to the extreme, shaving off their jaws, getting their boobs done and their eyes. I suppose it can get to the point where you’re trying to be someone you’re not.”
***
Dr. Edmund Kwan’s office sits in Manhattan’s Upper East Side, a stone’s throw from Cornell-New York Presbyterian Hospital, where he completed his plastic surgery residency in 1994. Though he did not train on a single Asian during his residency, his private practice serves a mostly Asian clientele that is 50 percent Korean. His patients are also Chinese, Japanese, Filipino, southeast Asian, Caucasian, and Latino, and most are women between the ages of 20 to 40.
Asian plastic surgery, explains Kwan, approaches procedures in a way that preserves, rather than eradicates, a person’s ethnic appearance. The two most common procedures among Kwan’s Asian American patients cater to the eyelid fold and nose.
The popularity of double eyelid surgery may suggest that Asians are seeking the historically desirable look of large, Caucasian eyes. Many have argued that by virtue of creating an eyelid fold — regardless of a surgeon’s sensitivity to race — an Asian patient is diluting one’s ethnic countenance. But Kwan counters, “When you look at populations in Asian countries, 20 to 30 percent do have a naturally-existing eyelid fold. To put in a fold doesn’t translate to ‘Westernizing’ one’s appearance.”
Yet the surgeon does acknowledge that 30 years ago, patients, as well as doctors, did approach eyelid surgery as an effort to look more Caucasian. Plastic surgery in general, did originate from techniques developed specifically for a Western population, so it was not uncommon to see Asian women with large, high eyelid folds that looked “funny and unnatural,” he says. “No Asian has that kind of eyelid fold.”
Which is why his approach is to create a small fold that still makes the eye look larger. Usually, he makes a conservative cut 7 millimeters above the eyelash line, and after the skin drapes over, the resulting fold is measured at roughly 2 or 3 millimeters.
“Eyelid fold surgery is an Asian-specific surgery, and the technique is clearly different,” says Kwan. “I’ve seen these things at 12 millimeters, which is huge. Most of the plastic surgeons out there do not do it, and it’s something that most residents who are training do not see.”
Similarly, with nose jobs, plastic surgeons would simply put a Caucasian nose on an Asian face. Plastic surgery has long been, and continues to be, a white male-dominated field, and surgeons who are not familiar with non-white aesthetics may assume that an ideal nose is one that belongs on a white person. Kwan’s nose implants, therefore, tend to be less big and thick.
“Even today, doctors are doing some Asian noses and making it look somewhat Caucasian,” says Kwan. “But Asian noses need to maintain a certain height relative to the face; you can’t have a nose that’s so high or starts way up near the eyebrow area. That tends to make them look more Western, and a little strange.”
The importance for Kwan’s patients to still look Asian is not just a philosophy adopted by the surgeon. Most of his patients walk in specifically asking for surgery that will not dilute their ethnic mien. It suggests a shift in American standards of beauty, especially now that Asians are becoming more visible and mainstream.
“Ten years ago, you hardly saw any Asians on television,” says Kwan. “That’s changed, now that people are getting exposed to Asian faces. Most of my clients want to look like themselves, only better.”
Now, board-certified surgeons nationwide are offering ethnically sensitive procedures. Dr. David Kahn in San Francisco promises non-white patients that he will not “Caucasian-ize” the nose. In Beverly Hills, Dr. Charles Lee specializes in Asian cosmetic surgery at his Enhance Medical Center. On his website, his technique is described as “developed specifically for the Asian anatomy to enhance the Asian face … Our goal is to enhance your appearance, while preserving your cultural identity. We never try to Westernize the Asian face and body through cosmetic surgery. Instead, we aim to help our Asian cosmetic surgery patients attain harmony and balance.”
It is unclear, however, whether the model used on Lee’s website is Caucasian, Asian, or a combination of both.
***
At home and abroad, the increase in plastic surgery is married to the cult of celebrity. In the United States, it’s no secret that women walk into offices with photos ripped from magazines, requesting that their faces are transformed to resemble Angelina Jolie, Gisele Bündchen, Nicole Kidman, or any other A-lister famous for being beautiful. A responsible surgeon, of course, would tell the patient that those expectations are far-fetched.
In more extreme cases, plastic surgery can render disastrous results if requested by those afflicted by body dysmorphic disorder, a psychiatric condition in which a person is excessively preoccupied and concerned about real or imagined defects in their physical features. (Take one look at Jocelyn Wildenstein, a New York socialite whose multiple surgeries have produced a face not unlike a feline’s.)
This year, the International Society of Aesthetic Plastic Surgery released a survey titled, “Celebrity Influences on Plastic Surgery.” The stats, compiled through 20,000 plastic surgeons in 84 countries, indicated that one of the world’s most coveted pair of lips belonged to South Korean actor Jang Dong-Gun, known for his role in Taegukgi.
Surely, surgeons such as Kwan benefit from the popularity of cosmetic surgery among Asians and Asian Americans. Yet he is critical of the fast-growing trend, especially in South Korea.
“There is too much, and it’s not all good,” he says. “There’s clear danger in it being so readily available.”
The writer of the “Ask a Korean” blog described the plastic surgery craze in Korea, especially among women, as a “disgusting national disease” driven by “conformity, sexism, and a hyper-competitive society.”
And as with any surgery, there can be complications. Jaw reduction surgery, for example, which is sought by South Korean women who have wider jaw bones, is a relatively safe procedure but carries the risk of damaging the nerves that control the facial muscles. A surgery gone awry could lead to partial paralysis of the face.
Kwan also disapproves of the widely accepted practice among South Korean parents to pressure their children to undergo cosmetic surgery.
“Moms in South Korea want their daughters to have eyelid and nose surgeries before they get married or have kids,” he says. “They’re trying to optimize the daughter’s appearance, and look at it as a prerequisite. And a lot of [the daughters] don’t even need it.”
To a degree, Kwan witnesses similar trends at his office. Korean American mothers will come in with their teenage daughters, demanding surgery. “The mom will say, ‘She wants an eyelid fold, she wants a nose. I know best, she doesn’t know.’ Then I will talk to the daughter and see what she really wants, or whether she wants it at all. Some of these moms are forcing it on their daughters who don’t want it, and I will tell the mom that it’s not appropriate. My allegiance is to the patient.”
Before emigrating from South Korea to the United States, Joyce Park, 27, received double eyelid surgery. She was 15 years old. Before her family left Seoul, her grandmother, who already lived in the States, called her parents and urged them to take Park to a plastic surgeon.
“My grandma said that [double eyelids] would make me look more friendly,” says Park. Her older sister has also undergone eyelid surgery, as well as her mother and three aunts.
“I woke up one morning, and my parents told me I was going to the hospital,” recalls Park, who works in marketing and special events in Gardena, Calif. “During the procedure, I was shaking like crazy, and during recovery, I was in stitches and had to go to school like that. But everyone thought [the end result] was cool, and when I told them I had eyelid surgery, they said they wanted to get it done too.”
Park’s subtle fold suits her face, and there is no denying that she still looks Asian. Though she believes other Asians may attempt to obscure their ethnicity by altering their facial features and breasts, or lightening their skin, she doesn’t regret her procedure in the least.
“I was nervous and scared, but I wasn’t protesting,” she says.
***
Kwan, who has been a plastic surgeon for 15 years, was born in Seoul. With his family, he moved to Trumbull, a Connecticut suburb, when he was 8 years old. It was 1969. Ever since he was a kid, he wanted to fix things that were broken: radios, toasters, shutters, doorknobs. He also had an eye that caught “things that were out of alignment,” he says. “I fixed anything that wasn’t working. I painted houses, rearranged and redecorated rooms.”
Now 49 years old, Kwan was no stranger to standing out. “We were the only Asians for miles,” he recalls. “There weren’t many Asians in Connecticut, and there was one Korean restaurant in New York City, if you could imagine.”
In the beginning, it was difficult, Kwan says. “I was different. There is always racism that exists, especially at that time.”
With a chuckle, he admits he wanted blonde hair and blue eyes. He didn’t speak Korean. “I ran from it as far as I could,” he says. “I wanted to assimilate quickly in America. I would look in the mirror and think, ‘How come I’m not American?’ Then in medical school, I realized, ‘I am American. I look different than the Caucasian Americans, but I still am an American.’”
Kwan finds it amusing that he grew up rejecting his appearance and now, as a professional who could profoundly alter Asian faces, instead works to maintain and enhance them. “I did a complete turnaround,” he says.
These days Chinese women frequently enter Kwan’s office, requesting that they resemble not Caucasian, but South Korean, actresses. When this happens, the surgeon attempts to break down the patient’s goals.
“Obviously, you can’t look exactly like a Korean celebrity, but I ask, ‘Do you like her eyes, nose, facial shape?’ We work on each one and modify. I just want to help them look their best so that they can feel better about themselves. I’m not trying to make them look Caucasian at all. A huge eyelid fold, a nose implant that’s way high? I’m not doing that.”
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Featured Event
One of the the biggest Asian cinema events to hit Southern California opens on May 10. The Los Angeles Asian Pacific Film Festival, presented by Visual Communications, features the latest works by established and emerging filmmakers, along with seminars, panel discussions and symposiums on topics relevant to Asian Pacific cinema.
Opening Night features “Shanghai Calling,” directed by Daniel Hsia and starring Korean American Daniel Henney, who plays a Chinese American expat lawyer navigating his way through the mean streets of Shanghai (the picture above also indicates he is a raisin smuggler). But does he take off his shirt? Go watch the movie to find out! read more
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