By Natalie Winegar
When you hear the word glaucoma, a vague notion of an eye disease might pop into your head.
But when you meet 16-year old Danielle Fiarito, who has had glaucoma for 12 years, it puts a smiling and determined face on the disease.
Danielle is as busy as a high school junior can be, studying hard, working on projects that let her explore her love of graphics and TV production, and running cross country and track.
Danielle is an athlete who already runs the mile in under 6 minutes and is striving to improve her personal best time and qualify for the Illinois state championships this spring.
She's a competitor because she's had to be. She's been fighting problems with her eyes for all her life. "I can’t really remember when I didn’t have glaucoma," she says.
"Glaucoma in children is rare. Having congenital cataracts as a baby like Danielle did is a risk factor for glaucoma and Danielle and her parents have done what glaucoma patients need to do. They've been diligent in making sure that she's taking her drops and regularly seeing her doctors," said Ben Gaddie, O.D., head of the Gaddie Eye Centers in Louisville Kentucky.
Danielle's battle has truly been a family affair.
Her father Dan, a financial advisor with Edward Jones & Company, remembers how frustrating and time-consuming the trips to doctor were while the family was looking for answers. Her mother, Maureen, a marketing representative for Carter's and Oshkosh, speaks eloquently about how her daughter has courageously endured nine different surgeries. Her younger brothers, 11-year old Jake and 7-year old Corey also serve to inspire, and of course, at times, torment their older sister.
But it's the words of Danielle, in an essay she wrote for school, that tell the story the best:
"People just don't understand, because they don't go through what I go through and I don't think they would be able to. One day I was reading a book and a girl asked me if I could read that book. "Yes" I replied at first wondering why the heck she asked me that until she said "No I mean can you see what you are reading?" I wanted to tell her, and scream at her 'Yes!'" What the heck do you think I'm doing if I'm not reading this book?! But I simply just answered yes and kept reading, because I knew this girl has no idea what it's like to have one eye. Yes, I'm blind in my left eye. I don't even remember when I lost my sight in it. Luckily for me my right eye has better than 20/20 vision."
She thinks about glaucoma every day, and has taken the responsibility to put the drops in herself and that's the key to her keeping her vision intact.
"The importance of taking the medication can't be emphasized enough," said Dr. Gaddie who also is the Vice President of the Optometric Glaucoma Society.
Glaucoma is one of those diseases that is a silent adversary. The Glaucoma Research Foundation of San Francisco, a leader in the effort to cure glaucoma, warns that half of the people who have glaucoma don't know it.
"You don't know you have it until real damage is done, which is why we need to see a patient at least every year," said Dr. Gaddie.
People should have annual eye exams, but many don’t. In fact, most people don't even see their eye doctor every two years. When you go, it is important you get a comprehensive exam, including having your eyes dilated.
"We look at the pressure inside the eye and look at the optic nerve, which glaucoma can damage. We have a number of ways to do that including something called Optical Coherence Tomography, (OCT)" added Dr. Gaddie.
OCT, like the RTVue device made by Optovue, Inc. of Fremont California, lets the doctor measure thickness of both the retinal nerve fiber layer and the ganglion cell complex, which may show signs of glaucoma first.
Pediatric Ophthalmologist Stephen Prepas of Newport Beach California, who says that it's rare but a person can be born with glaucoma, uses OCT as well.
"We work hand in hand with the pediatrician if he finds some anomaly in the eye that needs to be explained. We have the right tools to analyze what's going on in the eye and to help the parents understand," said Dr. Prepas.
Once a doctor knows the structural integrity of the optic nerve, he or she can discern whether glaucoma exists. And if it does exist, the patient has to be diligent in making sure he or she does what the doctor tells them.
As we've noted, Danielle Fiarito is already doing that. She has taken responsibility to do that herself, much to her mother's pride.
"She gets up early, before 6 a.m. and put the drops in, and then waits ten minutes and then puts them in again. It’s a process that she does three times a day because she has to, and she never forgets," said Maureen Fiarito.
Most glaucoma patients would be wise to follow Danielle's example, but many don't. Not adhering to treatment is a major reason vision loss in glaucoma patients.
Her glaucoma obviously has forced Danielle to make some concessions.
"She's a very good athlete, but we have had to be cautious and protective of her sight so some of the contact sports like soccer and basketball have had to be put aside. She has thrown her passion into running and we are very proud of her," said her father, Dan.
And the Fiaritos have taken their competitive spirit and aimed it at the disease that Danielle is fighting.
"We know that glaucoma can happen to anyone. Danielle is living proof of that. So as a family, we feel compelled to educate others about the seriousness of this disease," said Maureen.
And that's not just lip service. Since 2003 the Fiaritos have been helping the Glaucoma Research Foundation through a variety of fund raisers and have raised thousands of dollars. Danielle, in particular, has been active in helping raise awareness and raising money to help researchers better understand and ultimately to hopefully find a cure.
January is Glaucoma Awareness Month and the Foundation is busy raising new funds for its research and education efforts.
All of this takes us back to Danielle and her essay that captures her spirit and her determination.
"My experiences have made me who I am, a strong person with many accomplishments so far, and definitely more to come. I know I can do anything if I want to if I give it my all. My situation is never going to stop me. It may bring me down for a day, but I'll come back fighting."
Little doubt of that, Danielle.
Resource:
- Glaucoma Research Foundation http://www.glaucoma.org
- Optovue, Inc.
http://www.optovue.com/
- Gaddie Eye Centers, Louisville, Kentucky
http://www.gaddieeye.com/
- Optometric Glaucoma Society
http://www.optometricglaucomasociety.org/
- Kentucky Optometric Association
http://www.kyeyes.org/
- Edward Jones and Company
http://www.edwardjones.com/en_US/index.html
- Vernon Hills High School, Vernon Hills, Illinois
http://vhhscougars.org/
- Carters and Oshkosh
http://www.carters.com/
- Dr. Stephen Prepas, Newport Beach
http://www.stephenprepasmd.com/