Findlay teen fights rare health conditions

Nadia Yu has all the qualities of a typical teenager — she's a soccer player, foodie, Starbucks lover, and a musical theater enthusiast. But the 17-year-old deals with a lot more than most at her age. Yu struggled with stomach pains that could never be pinpointed, though she was diagnosed with Ehlers Danlos syndrome and, four years ago, added postural orthostatic tachycardia syndrome to the list. "I was always in pain. But it wasn't extreme, I guess, to that extent," said the high school student. Ehlers Danlos syndrome is a genetic disorder that affects virtually every organ system. Symptoms include skin hyperelasticity, joint hypermobility, atrophic scarring and fragile blood vessels, according to the National Institutes of Health. POTS is a group of disorders with a condition that causes an excessively reduced volume of blood to return to the heart, usually after standing up from laying down. It also causes lightheadedness or fainting. "In March of last year I was at a soccer tournament. I was playing, having fun with my friends and we ate dinner together," Yu said. "Then I went back to bed and I woke up with horrible stomach pain. I was throwing up but we just thought (it was) food poisoning or the stomach bug or something." In one weekend, Yu's life changed forever. "I went to play the next day and when I was trying to run on the field, I had the horrible stomach pain again," she said. "I couldn't breathe. I had to come off the field." Yu was in and out of the local ER for months on end. "The end of April was when I started to get really sick," Yu said. "It really was just routine for me to go to school and pass out." Yu and her family were unable to find a doctor who could get to the bottom of her condition at first. It wasn't until her mom, Stephanie, began recording her daughter's story on Facebook that they found an answer. "There is a surgeon out of Toledo, his name is Dr. (Bernardo) Martinez," Yu said. "He was the first person that we reached out to to see if he would look at our scans. He gave us an idea of what was going on." Yu and her family received a second opinion from Dr. Richard Hsu, a doctor in Connecticut, who agreed with Martinez' previous findings. Yu was later able to get her official diagnoses from a doctor in Boston. Dr. Kurtis Kim diagnosed her with median arcuate ligament, superior mesenteric artery, and Nutcracker and May-Thurner syndromes. The celiac artery in the chest is compressed with MALS; the small intestine is compressed between the aorta and the superior mesenteric arteries with a syndrome of that nature; the left renal vein is compressed with Nutcracker syndrome; and the right iliac presses against the left iliac vein in the legs with May-Thurner syndrome. "Every day is just so different with the conditions I have. It's almost like you're going to wake up one day and feel great; the next day you're going to wake up and feel terrible," she said. A person without these conditions can do a task and move on with their day — Yu said she gets wiped out just by showering and getting dressed. "If I want to get out and do something, it's like we go and do that one thing. Then, we come home and I rest because it's just so exhausting," she said. Yu realized how much her life revolved around eating food since becoming tube-fed. "My hunger cues never went away," she said. "Eating through a tube doesn't necessarily satisfy your hunger." When she decides to eat orally, Yu said she'll deal with the consequences. "Honestly, what I eat is crackers. It's pretty much like having a stomach bug," she said. "That diet of plain rice, bananas or crackers is kind of just what I have to eat throughout the day if I don't want to get ridiculously sick." Yu had a median arcuate ligament release surgery last November to help with some of her issues. The invasive surgery cleans the artery with scar tissue. It also relieves stress on nerves that cause it to be inflamed. Yu said it was an extensive procedure that kept her in the hospital for five days. Living with illness Yu is entering her senior year at Findlay High School, and is currently taking all of her classes online. She said she considered herself one of the popular kids at school. Ever since she had to stop playing soccer and quit going to school, she and her friends have lost touch. "We did everything together," Yu said. "As soon as I got sick, they cared for the first few weeks." But Yu has found a new friend — someone with the same illnesses as her. Maddy Cunningham reached out to Yu over Instagram. Yu said the girls shared a lot of the same symptoms. The two would only communicate over social media until Cunningham's mom asked Yu to visit her daughter in the ER. Prior to the invite, neither of them had been face-to-face, Yu said. "When I walked into her room, she was asleep," Yu said. "I was talking with her parents and she woke up for a second, but she was really groggy." Cunningham instantly recognized her friend. Yu said she and Cunningham's parents were crying. It was an impactful moment for Yu. "Since then, we're so much closer. To have somebody in my own community with the same rare sort of conditions going on is insane to me. It blows my mind that there's somebody who was suffering as much as I was," she said. Yu found a lot of support for her conditions through social media, and she's thankful for it. "Honestly I have a few other friends in different states that I'm friends with now because they're going through the same thing," she said. Yu doesn't let her conditions stop her from pursuing her dreams. One of those dreams is going into the medical field. Yu is currently a nurse's aide at Birchaven Village. "Just recently I started job shadowing, once every month or like once every few months just to kind of get out in the field. Eventually, I do want to get my RN and be a nurse somewhere," Yu said. Yu's parents, who both work in the medical field, have supported their daughter throughout her battle with her conditions. "In the beginning, I didn't know what I was doing, so my parents were doing everything for me," she said. "They were setting up my feeds, they were helping me get dressed and get in the shower and they were helping me get to places and come home. I really didn't have any independence." The teenager has become more independent after her surgery in November. One of the most important things she does is administer her own "feeds" through her feeding tube. Feeds is the colloquial term for "total parenteral nutrition," or TPN. These liquid nutritional formulas are delivered to her body through an IV attached to her tube. "After surgery, my pain has gotten better," Yu said. "So now my health care and what I do every day is on me. I do it just as part of my daily routine." On top of feeds, Yu has several medications she takes to manage her symptoms. "I have seven or eight different things that I take three times a day. It's a lot. But honestly that's about the only thing keeping me stable," she said. "So I'm willing to do it." Yu and her family go on a road trip every few months for medical appointments in Virginia. Yu sees a neurologist and gastroenterologist that specialize in her conditions there. Yu's surgery also took place in Virginia. "It's very far, but at this point, we'll do anything," she said. "We searched for a long time to find a surgeon that I was comfortable with and we met with three different ones and we ended up going with Dr. (Margaret) Tracci." As an incoming senior, Yu spends a lot of time looking at colleges. "The blessing of being between Ohio and Virginia is that I got to see a lot of colleges," she said. "When we were (in Virginia) and we didn't have anything to do, we walked a college campus." But the University of Dayton, Ohio State University and University of Cincinnati are her current top picks. "I've known that I wanted to be in health care in some way, shape or form when I got older and eventually graduated," Yu said. Yu says the traumatic experiences from her illnesses motivate her to become a great nurse one day. "I had great nurses and I had nurses that were just terrible," she said. "Those nurses that were great impacted my life. And that's something that I definitely want to do one day for somebody else." Yu has plans to attend her senior year in-person and eventually would like to continue playing soccer.