North Texas Daily

Student battles disease and stigma with nonprofit

Student battles disease and stigma with nonprofit

Student battles disease and stigma with nonprofit
November 19
10:52 2013

John Jacob Hough / Contributing Writer

Imagine the pain of pouring salt into an open wound on a daily basis. Now imagine that the salt could be almost anything you eat, and the pain is located deep inside your body.

For biochemistry freshman Julia Nixon, founder of the nonprofit Quantify the Understanding of Interstitial Cystitis Julia Nixon, this is the reality she faces every day.

Nixon lives with interstitial cystitis, a chronic inflammatory disease that causes ulcers and cuts to form on the inner lining of the bladder. Any food or drink taken into the body can come into contact with these cuts and cause excruciating pain.

“I don’t know a single person that lives a normal life with this disease,” Nixon said. “Either you choose to do something about it or you just suffer.”

Although the disease has been diagnosed since the 1800s, little is known about the disease and there is still no cure.

A study by the RAND Corporation in 2012 estimated that between 4 and 12 million people in America suffer from IC, depending on how many people live with the disease without diagnosis. That only amounts to about 1 to 4 percent of U.S. citizens who have experienced IC.

The lack of knowledge and awareness surrounding IC prompted Nixon to start Quantify the Understanding of Interstitial Cystitis, a registered 501(c) nonprofit with the mission “to create a community for people with IC and others around them to better understand the disease.”

The primary goal of the organization is to spread awareness about the disease and provide a network of comfort for those affected by the disease.

The comfort aspect is especially important for college-aged students who have the disease, which normally affects women over 40.

“IC literally takes away the quality of life, and I want to give some of that back,” Nixon said. “I have to do this for all of the people who can’t.”

Struggles with IC 

For Nixon the pain is very real. In high school she pole-vaulted and had even tried to gain a college scholarship. However, the pain began to grow to such a high level that she would often have to spend an entire day recovering after a workout.

Nixon eventually had to give up on her athletic dreams, but the pain still interfered with everyday activities such as simply sitting at a desk. Sometimes when the pain is at its worst, she can’t even garner the strength to step out of her car and go to class.

“I didn’t even know if she would be able to go to school,” Nixon’s mother Angela Nixon said. “Most parents miss their kids when they go away, but I was so proud of her for just trying.”

While there are medications available that provide some relief from the pain, no medicine has been found to stop IC at the source. For now, in order to prevent costly surgery to relieve pain, patients are often instructed to change their diet to eliminate foods that are known to cause pain to IC sufferers.

For Nixon to be pain free, she has to avoid all foods that have come into contact with any pesticides or preservatives. However, this isn’t as easy as just avoiding fast food and processed food.

“Even an organic grocery store doesn’t have what I need because they’re still allowed to use some pesticides,” Nixon said. “The only thing I could do is find a local farmer that doesn’t use pesticides.”

Her dietary needs are so specific that she even had to register with the Office for Disability Accommodations so she could cancel her meal plan and move from her dorm to an apartment where she can better prepare her own food. ODA could not comment on specifics of Nixon’s case.

However, despite IC being declared a disability by the U.S. in 2002, Nixon has had a difficult time in the past convincing others that she needed disability accommodations such as a handicapped parking pass.

“We have even been to doctors that said, ‘Oh, it might just be in your head,’ but I knew that wasn’t the case for my daughter,” Angela Nixon said. “She is the strongest girl I know.”

Problems with understanding are often associated with “invisible disabilities” like interstitial cystitis.

Invisible disabilities can be classified as any disorder that affects a person’s quality of life without showing physical deformities. Learning disabilities, psychiatric disorders and other chronic pain diseases such as fibromyalgia or endometriosis often fall under the same category. Many of these diseases aren’t even recognized as disabilities.

Office of Disability Accommodations director Ron Venable said educating the general public on invisible disabilities is the hardest part.

“Our largest population we serve by far is invisible disabilities,” Venable said. “Determining if they have a need isn’t the big challenge. It’s getting people to understand that a cane, guide dog or wheelchair doesn’t define disability.”

The Future of QUIC

While she is still in school, Nixon is exploring different ways to help QUIC grow as an organization. She has even applied to appear on Doctor Oz and TED Talks.

“I’m slowly figuring out that I’m an activist, which sucks because not everyone likes activists, but someone has to do it,” Nixon said.

In addition to QUIC, she has formed a student organization called Food Anonymous, which is aimed at creating a support community for students with dietary limitations.

Nixon originally planned to work with other student organizations such as the Alpha Delta Pi sorority and Alpha Epsilon Delta pre-health organization to organize several events to promote QUIC. However, she will instead be working with student organizations.

Her plans include an attempt to break the Guinness World Record for the largest game of Twister in history at the Coliseum on March 7.

“Julia updates me periodically, and everything seems to be going her way,” said Tyler Ingersoll, kinesiology junior and president of Alpha Epsilon Delta. “I don’t see any reason why she shouldn’t be able to accomplish her goals.”

In addition to leading QUIC, Nixon also hopes to obtain her Ph. D and conduct medical research with the goal of finding a cure for IC.

Nixon admits that she expects to contribute to QUIC for the rest of her life.

“This is a lifestyle I have to live,” Nixon said. “If it’s not an obsession, it’s not going to have the same impact.”

Feature photo: Biochemistry freshman Julia Nixon runs a non-profit organization that advocates for her disease Interstitial Cystitis. The project began about 4 months ago during the summer, and her end goal is to raise money and awareness that can further research of the disease. Photo by Aidan Barrett / Senior Staff Photographer 

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