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Physically challenged and fashionable

By Kat Kinsman, CNN
August 6, 2012 -- Updated 1353 GMT (2153 HKT)
Jessica Floeh started the Hanky Pancreas fashion line as her Parson's thesis project. The necklace holds her insulin pump. Jessica Floeh started the Hanky Pancreas fashion line as her Parson's thesis project. The necklace holds her insulin pump.
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Designs to disguise and emphasize
Designs to disguise and emphasize
Designs to disguise and emphasize
Designs to disguise and emphasize
Designs to disguise and emphasize
Designs to disguise and emphasize
Designs to disguise and emphasize
Designs to disguise and emphasize
Designs to disguise and emphasize
Designs to disguise and emphasize
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STORY HIGHLIGHTS
  • Patients who use external medical devises can have difficulty dressing around them
  • Insulin pumps, colostomy bags and tracheotomies can limit clothing choices
  • People who require the devices have created stylish accessories for them
  • Online forums give people who need these devices to survive ideas and fashion options

(CNN) -- Scan any well-stocked newsstand, and you'll no doubt find a bounty of women's magazines touting tips for achieving bouncy hair, kissable lips and a cellulite-free derriere.

What you won't see are headlines hyping haute insulin pumps, artful colostomy pouches or flirty tracheostomy covers. Meanwhile, there are countless women dealing with the daily challenge of feeling beautiful while tethered to a device that's necessary to stay alive, but often unlovely to look at.

In decades past, people with external medical appliances were sentenced to life of voluminous "clown clothes" (as one ileostomy wearer puts it) and counseled to hide their conditions as best they could. But in this golden age of Internet community, designers and patients are taking matters into their own hands to create clothing and accessories that help women feel gorgeous in their own skin -- and spark conversation about a previously taboo topic.

The secret surgery

In 1990, Leah Humphries went to sleep as a carefree young woman and woke up with a hole punched in her gut and a pouch strapped to it. The 22-year-old art student had been diagnosed with Crohn's disease 20 months earlier and checked into the hospital for colon surgery she hoped would bring some relief. The disease ended up being more severe than anyone had anticipated, and the surgeons re-routed her small intestine out through an angry red opening -- a permanent "stoma" -- on her abdomen. While the ileostomy may have saved her body, it crushed her soul.

For a year, Humphries spiraled into sadness. She'd always been a free-spirited, active, pretty girl, yet she suddenly found herself keeping company with other ostomy patients many decades her senior. They were content to while away afternoons shooting the breeze, tented in loose, flowing clothes calculated to conceal the existence of a pouch full of their waste and never talking about the more private aspects of their condition.

It was called the "secret surgery" for a reason. Many ostomates at the time were unwilling to discuss the social issues surrounding the mechanics of their device (which have improved radically since then), and the prevailing image was, as Humphries said, "Grandpa had the bag, and you kept him in the corner, and he smelled."

"I was so appalled at the way I looked, and I didn't want anyone else feeling sorry for me," she recalled. Humphries hid the fact of her surgery from most of the people around her, until one day she received a call from her ostomy nurse. There was another young patient having a rough time with her transition, and she needed to know that her life as a woman wasn't over.

Humphries shared the tricks she had picked up -- including wearing control-top stockings to minimize the outline of the pouch in form-fitting clothes -- and found a little something for herself: a purpose.

Now 44, as a mentor and public speaker, Humphries works to dispel myths about life with an ostomy ("A lot of people think they can't even go swimming in the pool!") and instill a message of positive body image to women struggling to feel whole again.

After her first marriage (an "ostomy-based decision," she says, that kept her in an unhappy relationship because she feared that no one else would want her) ended, Humphries faced the awkward possibility of having to bare her medical appliance to a new partner. But rather than shrouding herself in a full-length nightgown or relying on high-waisted, split-crotch underwear preferred by many female ostomates, she came up with an innovative solution: a heart-shaped pouch cover that looks like a piece of lingerie rather than camouflage.

Humphries, who married again and now has a 14-year-old son, works as a designer and branding expert and markets My Heart Ties as "The world's most beautiful ostomy cover." She encourages wearers to regain their "dignity, freedom and femininity" rather than thinking of their body as something for which they should apologize.

Fashion vs. function

At 21, Jessica Floeh had been dealing with type 1 diabetes for 17 years and finally gave in to wearing an insulin pump. She'd resisted in part because of potential social awkwardness and inconvenience, a fear reaffirmed by all of the professional guidance she received.

"All of the advice was about how to hide it," she said, and for a while, she internalized the shame and stigma. Floeh broke up with her boyfriend, unable to deal with her own body issues and "cyborg anxiety," and took to stuffing the pump out of sight in her bra or somewhere else it couldn't be seen.

As a student of sociology, technology and design, Floeh quickly realized that there was a huge gap between function and everyday reality for wearers of devices like hers. The pump wasn't always easy to keep in place, occasionally malfunctioned because of that, and was just plain dull to look at. "I need to be a part of making that better," she decided.

Her 2010 masters thesis project at Parsons The New School for Design evolved into the Hanky Pancreas fashion line. Items like scarves, necklaces and slip-on bands made with protective fabric can hide the pump or glucose monitor in elegant draping, behind a fabric flower or in a discreet pocket, or it can be used to spark a conversation.

"It's a huge part of your identity," Floeh said. "And these designs allow you to share your story in a non-medical space if you want to."

But still, she wondered, why did a device that essentially functions as an external body part almost entirely neglect the aesthetics of the body? An opportunity to meet with the makers of one of the leading pump brands shed some light on the disconnect.

"They were all men! With phones and pagers clipped to their belts," she realized. "Of course they weren't thinking about this thing looking pretty."

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The engineers didn't know quite what to make of Floeh, she says, but she took it as a positive sign that a major medical appliance company was open to hearing what she had to say about social design.

In addition to marketing Hanky Pancreas, the now-27-year-old Floeh speaks at conferences and works within the medical community to close the gap between technology, social design and aesthetics. And, as she's discovered, despite her initial nervousness about dating with an insulin pump, "Guys are pretty cool with it."

Rylee Stark ran into a different sticky social situation: keeping up with her friends on the playground as they turned cartwheels, rode bikes and went about the business of being active 7- and 8-year-olds. Her mother, Corrie, in an effort to make her life as normal as possible, designed Rylee's Pocket tank tops with a built-in pouch to keep an insulin pump close and safe, and a hole for the delivery tube in back.

The Stark family sells the shirts (also available in women's and boys' sizes) through an Etsy store and hopes to generate enough funds to donate 60 shirts to a local camp for diabetic children.

But it's not just patients and their families working on elegant innovations. Some people simply have a skill and want to help.

Beautiful solutions

Nancy Horvath came across a Google message 12 years ago about a need for stoma covers for people with tracheostomies: surgically placed holes in the neck to allow breathing. Horvath had a business doing clothing alterations and decided to put her skills to use crocheting covers for these patients.

Horvath used to give them away, but she found that many people preferred to pay. Now, she charges a modest fee on her Etsy shop "fashionsforyourneck" but finds her greatest joy in giving them away to people who can't afford to buy them.

The rewards have been priceless. After a social worker contacted her about a patient who had not left her home in four years, except to see her doctor, Horvath told the woman to pick a cover from her website and sent it along with a letter telling the woman that she had to go to a store and just walk around. The phone call came shortly after, "You are an angel. ... You saved my life."

And for all of the people crafting beautiful solutions to bionic challenges, there are some who just want to unapologetically bare it all.

Charis Kirk runs the site Full Frontal Ostomy and hosts a Crohn's and inflammatory bowel disease group on Facebook, where she recently posted the message, "Will I have the GUTS to turn around and show my ostomy at the beach? I hope so." Members of the community chimed in with tales of their own attempts and posted dozens of messages of support.

But sometimes, there's just an audience of one. Video blogger Nadia Fuad shares style tips for women dealing with medical devices, but she also knows there will come a moment when all those tricks are stripped away. Though the 21-year-old comes from a culture that discourages dating until it's time to marry, she has been given some excellent advice.

"Feeling beautiful comes from within," she said. "You must have a strong sense of self-esteem almost from the beginning, because it is hard and it tests even the strongest person when it comes to body issues and confidence."

And as Fuad's mother once wisely told her, "Nadia, there is a man out there who will love you completely. I am positive if you are standing in front of him naked, he will not be looking at your ostomy."

Tips for dressing -- and undressing -- a medical device:

Nadia Fuad, United Colon Vlog

You don't have to break the bank on expensive clothing to fit your style and body type because you have an ostomy.

Modify pre-ostomy clothes or add an item to create a new outfit out of something old. If you don't think you have the creative touch, look online or on TV for tips and fashion tricks.

Pair a summer dress with a long-sleeved shirt underneath. If it is a short dress, I wear leggings underneath and make it into a tunic. I am half Pakistani, and I love to wear traditional salwar qameez or kurtas.

I also like to wear jeans (one size too big, to allow my pouch to fill up without restricting flow), linen pants or elastic-waisted pants that help. I usually always wear Ostomy Secrets undergarments, which help in hiding my pouch and keeping it secure to my body so I have more clothing type options.

My Doctor Knows Me Best From Behind, ostomy and IBD support group on Facebook

Use duct tape to decorate your bags! It makes them not so drab, and if they hang a little below your shirt, no one really notices! -- Carolyn G.

I get all my jeans from Motherhood Maternity. I get the kind with a full stretchy waist band, but not the kind that goes all the way up your stomach, and I get the kind that looks regular in the front but has a stretchy section on the back. They are awesome. I also always have a ton of plain tight undershirts to smooth out the bag. -- Sierra C.

I like to treat myself to inexpensive, fun, bright nail polish and cute hair accessories. Even if you're very ill, invest in a small effort to make yourself feel good about yourself. -- Sara M.

Charris Kirk, Full Frontal Ostomy

From the 30-Day Self Esteem Challenge:

For many ostomates, disguising our pouches is an almost constant concern. We worry that others will either catch a glimpse of our bags or see the outlines or both. I challenge myself to not look down to see if my pouch is noticeable when I'm in public.

I decorated one of my opaque ostomy pouches and then wore it for a week. The design was pretty simple and only took me about half an hour to complete, and the feeling I got seeing it in the mirror was good. For the first time, I saw the ostomy as something like an accessory and something uplifting.

Does a medical condition create fashion challenges for you? Share your obstacles and solutions in the comments section below.

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