By Lindsay Rassmann
Web Production Assistant

Aspiring jewelery designer and Brick native Rosie Raabe is many things: an artist, a daughter, a sister, a recent college graduate, a friend and a Jersey Girl (just to name a few). Most recently she added Salty Girl to that list.

Raabe has cystic fibrosis, a genetic illness that primarily affects the lungs and digestive system. The cells in the body produce a sticky mucus that becomes stuck and plugs vital organs, often resulting in frequent lung infections and digestive issues.

Cystic Fibrosis affects an estimated 70,000 people worldwide, with 30,000 of those cases in the United States. Raabe’s doctor, Dr. Doantrang Du from Monmouth Medical Center, estimates that there’s between 475 and 500 cases in New Jersey.

More than 75 percent of people with CF are diagnosed by the time they’re two years old, according to the Cystic Fibrosis Foundation. Raabe was diagnosed at the age of 3.

“As a growing toddler I would eat an insane amount of food. My mom would feed me hot dog after hot dog — up to four at a time — and I was not gaining any weight. I often cried about stomach problems and that led her to take me to a doctor where they sweat tested me,” she said.

The illness is diagnosed through a sweat test that measures the amount of chloride in a person’s sweat. A high level of chloride is a positive indicator for CF.

“Society mostly sees CF as a lung disease, and it is, but it is important to realize it is so much more. It is an entire body chronic illness,” Raabe said.

With more than 1,800 mutations of the disease, each and every case of CF is unique. Raabe’s CF is more gastrointestinal. She has cirrhosis and is in need of a liver transplant, she has CF related diabetes, hyper portal tension and a giant spleen that causes neutropenia, anemia and very low blood counts.  She needs pancreatic enzymes to digest her food and has chronic sinusitis.

For Raabe and others living with CF, it’s a 365 day a year, 24/7 battle.

“It never slows or gets easier. Since this is a progressive disease, the best we can do is maintain our baseline lung functions, liver functions, pancreatic functions, etc. — all while trying to live a life that is seen as ‘normal’ and fulfilling,” she said.

Photographer Ian Pettigrew’s Salty Girls Project (named after the diagnostic sweat test) features portraits of women with cystic fibrosis in an effort to change public perception of not only the disease, but also how beauty is defined.

“I want people to realize the daily toll CF takes on the body, that this is a fatal disease with no cure. Making it to your 40s is still a major accomplishment. I want people to be inspired by these women, as well as a younger generation of kids to be inspired by them,” Pettigrew said.

In addition to all the physical tolls of CF, Raabe says the disease can be just as isolating and lonely. Due to compromised immunities, most CF patients have a rule that they shouldn’t be within six feet of each other to avoid passing bacteria.

“It is very difficult to go through a lifetime of isolation from others with this illness,” she said.

Doing the photo shoot for Salty Girls in Daytona, Fla., she knew she would be breaking this rule, but for Raabe, “the connection and experience was worth the risk.”

“The feeling when meeting other CFers was indescribable. It was like we had an unspoken bond, and immediately the comfort that washed over me was simply astounding,” she said. “I don’t have any sisters, but these women have become the closest thing to blood. That’s why we call each other ‘cysters.'”

Pettigrew said Raabe bonded with the other girls very quickly. “There was an instant camaraderie. But she was very shy at first, but that’s typical for most girls. She’s so photogenic though so capturing a great photo of her was easy,” he said.

Meeting others with CF and learning to feel comfortable in her own skin were both things that came with time. Growing up, Raabe says she felt ashamed to wear tight clothes or bathing suits because of the feeding tube she had in order to gain weight.

“Imagine being told you’re malnourished (no matter how much you eat) and not thriving like most kids or young adults — being poked, prodded and treated like an experiment,” she said. “I felt violated and like a freak.”

And that’s part of the Salty Girls mission: embracing your body, learning to live in your own skin and feeling beautiful with who you are, no matter what you’ve been through.

Raabe became involved with Pettigrew’s project when she joined the cystic fibrosis community on Facebook, where Pettigrew (who also suffers from CF) posted his idea.

“On paper it sounds completely dodgy: a foreign photographer, whom you’ve never met, wants you to come to his hotel and pose at your most vulnerable. But now with the project taking off, it’s a much easier sell. Now they come to me,” Pettigrew said.

“I knew this would be big for me and for all girls and women with cystic fibrosis. The photo shoot helped me break away from depression, shaming my body for my scars and body tribulations. The Salty Girl Project is about showing that true beauty can be covered in scars and medical devices and still be just as, or even more, beautiful,” she said. “This is about empowerment, self-confidence and the sense of not being alone. It was really hard for me to emerge from that dark place of self-consciousness.”

She says what really pushed her to do this was not just for her own self empowerment, but for all the young girls that are going through what she did — the body shaming, the embarrassment, the depression, the lack of feeling “normal.” She wants them to know they are beautiful and to keep a smile on their face despite the physical and emotional turbulence. “You will get through it and become so much stronger,” she said.

She says recently the disease has been affecting her more than ever before. She recently graduated from the Fashion Institute of Technology in New York City with a degree in jewelery design, but getting there wasn’t easy.

Because of CF related complications, Raabe says she was hospitalized for two weeks out of each semester for intravenous antibiotics and other emergency situations.  These frequent hospitalizations turned the one-year program into a two-year one for her.

“When these situations arise, I have to literally pause my entire life just to fight off an infection. Luckily the staff at FIT has been accommodating and understanding, allowing extended due dates on projects,” she said.

Recently in the hospital from her latest bout with CF related problems, she was discharged just in time to walk at her graduation ceremony.

“I see hardships as hurdles to overcome. I never allow doubt or fear to drive me to give up. It may take me a little longer, I may be a little slower, but the pure fact that I succeed at something is just that much more invigorating and rewarding.”

The road here hasn’t been easy. She said that it took a great amount of begging and pleading to convince her parents to allow her to leave New Jersey to come to New York (alone) in order to pursue her dreams.

“It is very hard for my family and friends to watch me struggle like I have. It is hard for me to see them hurting for me,” she said. “Not only does my life have to pause when I am sick, but so does my mom’s. She never leaves me to do it on my own, and for that I am so grateful.”

She says doesn’t want anyone to have to watch their child (or friend or family member or significant other) suffer and struggle through these life tribulations cystic fibrosis sufferers have to go through. That’s why we need a cure.

“That’s why The Salty Girl Project is so important — to show we are not alone in this and to not be so critical of ourselves. We needed a voice, and more importantly a cure.”

For Raabe and others with the disease, it’s important to appreciate every day. For Raabe, who is only 23, she has the wisdom of someone much older.

“Living with cystic fibrosis, I am not guaranteed tomorrow, I am guaranteed a shortened life and a life of physical tribulations. This is why I appreciate every day, through the good, the bad; I find the silver lining,” she said. “Being able to expand my lungs at the beach, tasting the salt air, watching the birds in the sky, just laying my head on my own pillow and not a hospital pillow — these are all things most people take for granted, and I soak in. The hope for medical advancements and a cure is what keeps me focused. It has gotten me this far, and I don’t plan on giving up. I have a lot to do in my future, and a lot of jewelry to design.”

May is Cystic Fibrosis awareness month. To learn more about cystic fibrosis, visit the Cystic Fibrosis Foundation website.