When you look into 16 year-old Mia Resendes’ big brown eyes, you can see she is happy, vibrant, and full of life. There is a sparkle to them, a depth and determination about them, and she has a smile to match. Just by looking at her, you could not tell that Mia is battling a serious eye disease that has turned her life upside down in as many ways as it has enriched it. Mia has uveitis, and she wants you to know it.
Uveitis is a rare disease affecting the eyes and is also one of the leading causes of blindness in the United States and the world. It is the leading cause of blindness in girls. Uveitis, which causes inflammation of the tissue in the layers of the eye, can be devastating if not treated early. In Mia’s case, uveitis is accompanied by an autoimmune disease, possibly Lupus, which is common among the uveitis population. Awareness of its symptoms, says Mia, is the best way to prevent blindness – and she has built an army with a mission to raise awareness and funding for research and treatment to battle blindness.
“It all started when I was reading a book in bed,” said Mia. “I noticed a bit of blurriness in my central vision.”
Since her diagnosis four years ago, Mia has undergone a myriad of treatments including monthly chemotherapy to stop the spread of the inflammation of her second and third layers of her eyes. It’s like she lives a double life as she described it, because one day she is an eleventh-grade student at Old Rochester Regional, hanging out with her friends, playing on the volleyball team, and running track, and the next day she is a patient in a hospital hooked up to chemotherapy – the Mia that no one else sees, which is why so many have a hard time even realizing that Mia is sick.
“It’s not like diabetes and you have a pump and people see it,” said Mia. “It’s a double life. No one sees it but me. One part of me is completely fine and my friends don’t see me feeling sick at all.” Sometimes, people do not even believe she is sick, which is “really annoying,” she said.
“Even though my friends know about it, they don’t really know how scary it is for me,” said Mia. “It’s scary for me.”
What is also annoying is that, months ago, Mia started having seizures as a result of her nonspecific autoimmune disease– which brought with it annoying medication, the annoyance of not being able to bathe alone, swim alone, and at first, walk from class to class alone.
But, sorry, uveitis and the variety of other annoying things that go along with it. Mia cannot be stopped and, being the “dramatic” girl that she says she is, Mia and “Mia’s Army” are out to immobilize you and educate others to immobilize you as well. Because, uveitis, Mia and her soldiers have already raised about $100,000 over the past few years to raise awareness of you, fight you, and eventually find a cure to wipe you out.
Mia and her family live in Rochester. Back in 2010, she and her mother Andrea Pateastas got together a group of people to fundraise for the Ocular Immunology and Uveitis Foundation (OIUF), located in Weston, in the Walk for Vision. They named the group Mia’s Army, and that first year they were the top fundraisers, raising $15,000 for the walk.
Last year, Mia and her mom organized their first annual golf tournament fundraiser and it was a huge success.
“That was a big step for us,” said Pateastas. “Now we’re doing stuff for our own events.” From organizing to booking the golf course, and to garnering sponsors and participants, Mia and Pateastas take their mission seriously.
“We really, really, want to find a cure and a way to help people with uveitis,” said Mia.
Their goal right now is to raise enough money to purchase a sophisticated screening machine that can create an image of the entire eye, rather than the current technology that can only take many images of the eye to piece together.
“We want to get that machine,” said Pateastas. “It’s really expensive. We want to get that machine in Boston.” Pateastas said right now there is no machine of this type in the region. “And there are a lot of people that would benefit from that, having that type of equipment in the office.”
Mia and Pateastas are hoping members of their community might support their efforts by registering for the Second Annual Ocular Immunology and Uveitis Foundation Golf Tournament. The tournament will be held at the Pinehills Gold Club in Plymouth on Wednesday, September 2. The proceeds will benefit the OUIF in their mission to train doctors who diagnose and treat the disease, and provide patient education and research for a cure.
The mother-daughter team is also looking for local businesses to join in as sponsors for the event.
Uveitis hasn’t stopped Mia at all; in fact, it has given her a clear vision of what she must do.
“I don’t let it sit there in my mind and just think, ‘Oh, I can’t do this because I have uveitis,’” Mia said. “I go to track, I do volleyball … I love my sports. And I love snowboarding … and traveling. So I’m all about that.”
Except the Yellow Fever vaccine. That might keep Mia from traveling to some of the places she’d really like to visit, such as the continent of Africa.
But Mia has done a great deal of traveling in the form of volunteer trips, even volunteering to work with children in India, despite her sudden onset of seizures.
“I feel like, even though nothing really matters when doing those things,” said Mia. “There’s nothing that can stop me from going.”
Mia said she doesn’t want to be “that girl” who can’t “push through the pain.” Her joints often ache as a result of her autoimmune problems. She says she just “pops a Tylenol” instead of being “that girl who’s super-dramatic.”
“I’m not gonna let it hold me down. I’d rather be the girl who keeps running,” said Mia. “I’m going to end up being better…”
“The hardest part for me,” said Pateastas, “is seeing how, even though you want everything to be normal, and it seems normal sometimes, it is always looming in the back of her head.” Pateastas said she sees how pervasive Mia’s condition is for her daughter, and she just wishes she could fix it, make it go away. “It just doesn’t go away,” said Pateastas. “That’s the hardest thing for me.”
Mia has met other people and other young girls who, unfortunately, did not seek treatment in time and have lost their sight from uveitis. Mia and her mother want everyone to know that you should always see an eye specialist if you ever experience any blurriness of vision, no matter how insignificant it might seem.
“And get a second opinion,” said Pateastas, adding that uveitis is most often misdiagnosed as pinkeye, for example. That can waste valuable time in saving the patient’s eyesight.
Mia, her mother, and her father and two brothers are very active in the uveitis community, advocating for further research and speaking at events geared towards raising money for the cause and creating awareness of the disease.
If you would like to learn more about uveitis or the September 2 golf tournament to help Mia fight uveitis, visit www.uveitis.org
If you or your business would like to make a donation or sponsor the event, contact Andrea Pateastas at 508-728-0981 or email andreap@primomedicalgroup.com.
“Any donation is helpful,” said Pateastas. “[Uveitis] kind of overtakes you. I feel for people dealing with it. And we’re lucky. We are so lucky that we are able to deal with it. There are so many who cannot.”
By Jean Perry
