After a decade of being misdiagnosed with a skin fungus, asthma, and allergies, Erica Deazsa Powers gave up hope. "I just accepted the fact that I might be a hypochondriac, and it might all be in my head," she tells Inside Edition Digital.
Former model and video vixen Erica Deazsa Powers is fighting for her life as she battles several life-threatening conditions, but her own battle has not stopped her from working for others as she spreads awareness about the issue of invisible illnesses.
She remembers having unusual symptoms as far back as second grade but had an incident as a teenager that really stands out.
"When I was 13 years old, I was cheerleading," she tells Inside Edition Digital. "And out of nowhere my legs went paralyzed, so I just collapsed."
She also recalls moments of feeling weak, being tired while walking around the mall and always wanting to be at home. In addition, she often deals with skin flare ups.
"We went to the doctor, and the doctor told me that I was just experiencing growing pains," Erica says. "Nothing was really taken seriously enough for the doctors to want to go and do full testing."
Erica continued to experience symptoms well into college, and they became more intense. She had difficulty breathing, difficulty having conversations, pain, skin issues, brain fog and she was always lethargic.
"People used to be like, 'Oh, you act like a grandma. You always at home. You never go nowhere,'" she says.
"I was just used to popping pain meds," she continues. "My toes and fingers would feel like they're falling off. I'd be in bed trying to figure out, 'Why can't I move? I can't even bend over. I can't even put on my clothes without gasping for air.'"
After being misdiagnosed with ailments including a skin fungus, asthma and allergies, Erica gave up hope.
"I just accepted the fact that I might be a hypochondriac, and it might all be in my head," she said.
At 26, a flareup of symptoms and a visit to urgent care was the breakthrough Erica needed. After several tests, doctors noticed severe scarring on her lungs.
In April of 2022, she was diagnosed with Antisynthetase syndrome, an extremely rare autoimmune disease that affects the lungs. She was also diagnosed with Myositis, severe inflammation of the muscles, and interstitial lung disease, which causes progressive scarring of lung tissue.
Erica says doctors jumped into action after discovering her lung capacity was only at 46%. They started treatment immediately and said it was of the utmost importance that she get a transplant.
"It was bittersweet," she says. "I knew. I know myself, I know my body. I knew something wasn't right."
After getting diagnosed, Erica battled severe depression.
"The doctors told me, 'If we would've caught this when you were like 19, your lungs wouldn't have been this bad,'" she says. "I learned about what invisible illnesses are. So you cannot see what I'm going through."
Every day is a struggle for Erica just to be awake, as her pain and symptoms are constant. The oxygen tank she wears helps with breathing, but it doesn't completely solve her issues.
"It feels like you have been ran over by a truck," she explains. "Not only are you paralyzed and cannot move, but you also have a bunch of pain that is hard to withstand. You can't even lie down, sit or anything. It is so traumatic.
"My legs feel like they're detaching. My knee feels hollow and rotting, and my hip joints do the same thing," she continues. "My fingertips and my toes hurt really bad. It's just a feeling of everything is about to explode. It is so traumatic, and you feel like you're dying."
Because of her condition, she has moved from Atlanta to Florida, where her mother is now her caregiver. She's adjusting to a new daily routine but says daily tasks are complex.
"I shower, lay down for an hour. Get up, brush my teeth, lay down for another hour. Get up, fix my hair," she says. "You just learn how to live with this thing until it gets better, until you get stronger. And I'm getting stronger."
And though she may look OK on the outside, she's still struggling on the inside, she says.
"I'm over here with makeup on looking decent, and this person over here don't even realize I can't even breathe," she says. "I go through phases every day. I cry every day. I cannot believe this is my life. I could die from this lung disease."
When Erica was first diagnosed, her lung capacity was at 46%. It is now at 58%, which she credits to an autoimmune protocol diet.
"I noticed a difference. A spark in energy and lesser symptoms within two weeks of doing that diet," she says.
Erica hopes she can get a lung transplant soon, and is in the process of finding a transplant center that is a good fit. But even if she is approved for a transplant, she worries about the complications that can arise with the surgery.
"I accept it fully," she says. "Like, whatever happens, happens, I'm going to be OK regardless."
Since getting diagnosed, Erica has shared her journey on social media, and advocates for people battling invisible illnesses.
"I need to let everybody know what it feels like," she says. We go through it every day. You only see us when we feel good. It's the truth. This is me doing this in real time. Y'all are a part of the journey."
Although her journey now is complicated, Erica is hopeful that she will have a long and healthy life.
"I will not die from this," she says. "I will live through this, and one day I will be in remission. I don't have to accept this. I don't look at it as something that just came to just stop my entire life."
And she stresses that parents should listen to their kids.
"Be very sensitive to them," she says. "Take them to the doctor. Make sure tests are ran before you walk away and just accept what the doctor says."
For anyone battling an invisible or chronic illness, Erica says to make the most of a difficult situation.
"Look at right now as a pivotal moment at a point in time," she says. "Remember the things that you went through in the past that was meant to stop you and it didn't and see this now as the same thing as something that's going to rebuild you and reconstruct you.
"Stop looking back at the past and enjoy what you can and do right now," she continues. "You've already come so far and you've already been through so many things. Grief is the hardest part. Grieve yourself while you're still alive, see it as a lesson, and just move forward."
