For the past four years, Tessra Ponce’s life has been filled with pain and suffering.
The lifelong Washougal resident has been stricken with a disease that, as far as she knows, nobody else on Earth has.
To make matters worse, nobody has been able to determine what’s wrong with her or how to cure her.
“Doctors have never seen anything like this before,” said Ponce, 28. “I didn’t feel like they didn’t try. I felt like I was stuck with no one else to turn to. I felt discouraged and wanted to give up.”
But all of that might change soon.
Ponce will be featured on tonight’s episode of “Chasing the Cure,” a television show hosted by former “Today” show and “Dateline NBC” anchor Ann Curry that airs on TNT and TBS.
The show features a panel of doctors who work with a global audience to help people who are suffering from undiagnosed, misdiagnosed or uncured medical conditions.
“I’m at the point now where I want to expose (my condition) as much as possible to try to get an answer,” Ponce said. “It’s surreal to even have this chance. I’m excited and overwhelmed that somebody might finally be able to help me. To come across this show has been a blessing.”
‘Everything that could possibly go wrong went wrong’
In July 2015, Ponce began to suffer from oral issues such as dry-mouth and peeling of the gums. At first she dismissed them as minor conditions, which she attempted to resolve with a new mouthwash.
But during the next four months, her condition worsened. Her tongue began to swell and peel. The inside of her mouth bled and became entirely covered in white residue. She started to have respiratory issues and lost her voice. She couldn’t talk and could barely eat.
In November 2015, she was hospitalized with a swollen face, high fevers and an inability to eat and talk.
Doctors could only say that her cells were attacking each other, and that she had some sort of unknown autoimmune disease. They prescribed her Dexamethasone, a type of steroid that has kept her symptoms in check but also “wreaks havoc” on her body.
Ponce has gained 150 pounds due to water retention caused by the steroids. She’s developed what she calls “moon face” and “apple stomach,” her feet look like balloons (she hasn’t worn shoes in years) and her entire body is covered in stretch marks. Her legs are covered by open sores and blisters.
“Her legs literally leak water,” said Tina Lund, Ponce’s mother. “Wherever she’s at, there’s a puddle underneath her. It’s awful.”
And then there’s the indescribable pain. All day, every day, her entire body aches. It’s simply crippling, Ponce said, and it makes it difficult for her to walk across a room or even stand up.
If all of that wasn’t enough, Ponce was recently diagnosed with Type 2 diabetes, a result of steroid usage and weight gain.
“Everything that could possibly go wrong went wrong,” said Lund, who lives with her daughter. “This has ruined her life.”
Ponce described her situation as “emotionally draining and depressing.”
“It’s taken a toll on my life physically and mentally,” she said. “It’s scary because I don’t want to live like this forever.”
Previously an active, happy and healthy young woman, Ponce became lethargic, dispirited and moody following her mysterious disease.
She said she is reluctant to leave her house for fear that somebody she knows might see her. But she doesn’t have to worry about that too much because venturing out is too much for her pain-stricken body to endure.
“I’ve seen the life come out of the girl,” Lund said of her daughter. “She gets up every day and goes through the motions. She’s quiet. She doesn’t want to see people. She doesn’t live her life anymore. Her life is being wasted.”
The disease has also put a strain on her relationships.
“That comes from her being self-conscious,” said Ponce’s husband, Omero Ponce. “She used to be this really beautiful person in her own eyes, which I think she still is. Now her whole life has changed, and she felt completely surprised I’m still with her. Honestly, it seemed like she was trying to push me out for my own happiness. I tell her that I’m never going to leave, but in her own mind, it’s like, ‘Why are you still here?’ It’s sad, but I completely understand. If I were in her shoes I’d feel exactly the same way.”
Despite suffering through “four years of horribleness,” Ponce remains motivated to reclaim the life she once had.
“She just pushes through it,” Omero said. “She complains very little. If her pain is worse one day, you’d never know. She’s persevered through a lot of things. No matter how she’s feeling, she doesn’t show weakness. She’s very strong.”
Before being consumed by the disease, Ponce, a 2009 Washougal High School graduate, enjoyed outdoor activities such as hiking, swimming, camping and horseback riding, as well as baking.
Now she stays indoors and watches a lot of television.
“I’m still young. My husband and I want to have kids and live what most people would call a normal life,” she said. “I just want to work and have a house and a family, and I can’t do that with this disease. That’s a motivating factor for me. I do want a family. I do want to live a normal life. I want to do whatever I can before I’m too old to make it happen.”
For several years, Ponce attempted to gain admittance to the Undiagnosed Diseases Network, a research study backed by the National Institutes of Health Common Fund that seeks to provide answers for patients and families affected by mysterious conditions.
The study, which accepts 300 applicants per year, rejected every one of her applications.
“That was a frustration point for sure,” Omero said. “But as soon as we saw ‘Chasing The Cure,’ we thought, ‘This is a light of hope. Maybe this is it.’ Even if she’s not totally cured (by the show’s medical experts), there’s a chance that somebody out there watching might know something and be able to help. Even if we can just get her off the steroids, that would be great.”
A description of Ponce’s condition was posted on the “Chasing The Cure” website earlier this month. The post has received dozens of comments from people all over the world offering words of encouragement and possible diagnoses.
That outpouring of support has made Ponce feel a little less isolated, and more optimistic than she’s been in a long time.
“This has been a godsend,” Lund said. “She’s not the person I raised, but if somebody can get this under control, I think that person can come back out again. She’s waiting to come out. She needs to get out. She wants her old life back.”