A woman with tumors covering her entire body says cruel trolls dub her "the Thing from Fantastic Four" but she's learned to embrace her rare condition."

Mercedes Christesen, 54, was diagnosed with neurofibromatosis type 1 (NF1) at the age of 19. The disease causes benign tumors, visible skin bumps, and learning disabilities.

Often mocked for her appearance, Mercedes has learned to accept how she looks

- especially after having two daughter, aged 25 and 28, who also have NF1 - and now shares her story online.

Mom-of-two Mercedes - who is married to

Rodney, 60, a custodian - hopes to empower others to reject shame and embrace self-acceptance.

Mercedes, a content creator, from Boise, Idaho, said: "It does not bug me at all because they [the trolls] are ignorant and sadly, let's face it, we live in a very prejudicial world. "

"I was diagnosed at 19 via biopsy of the single one tumor that I had on my stomach."

"I get online and I get called the Thing from Fantastic Four. I get called, I can't remember the name, but this really grotesque character in anime."



"I get called a leopard. They tell me I don't belong on social media."

While Mercedes was first fearful, she said "it took a long time" to fully accept her condition."

Mercedes said: "I didn't have any of the diagnostic signs earlier."

She says it wasn't until the birth of her second daughter that the tumors "really erupted"."

Mercedes said: "I have two gorgeous daughters from a previous marriage."

"They both started getting tumors, visible tumors, I should say, way earlier than I did."

"But they don't have quite as many tumors as I do."

"It doesn't bother me anymore. I am strong enough and I like myself."

The tumors didn't fully emerge until after the birth of her youngest daughter at the age 29.

"But after giving birth to my second daughter at age 29, that's when all the rest of the tumors started really growing, and that's when I started getting the ones on my face," she said. "

For years, Mercedes lived quietly with her condition.

But five years ago, a single cruel comment on social media changed everything.

She had posted a video encouraging blood donation during COVID-19 when blood supplies were critically low.

Someone responded: "Ew, I wouldn't want your blood."

That moment sparked something unexpected.

"I went from barely a hundred followers to a hundred thousand followers overnight, quite literally," Mercedes said. "

Her follower count continued climbing as she began sharing her daily experiences living with neurofibromatosis.

Mercedes - whose nickname is "Hurricane" due to her whirlwind of passion - emphasizes that neurofibromatosis affects everyone differently. "

"No two people, even two people in the same family, are going to present with the same severity or get tumors in the same timeframe like I did," Mercedes said."

Her content focuses on the realities of living with the condition - chronic pain, chronic itchiness, and the social challenges that come with visible differences.

But more importantly, she answers questions from curious viewers and provides support to newly diagnosed patients and their families.

"A lot of people who have neurofibromatosis hide because of being made fun of, because of cruel comments," Mercedes said. "

"I don't want anyone, especially children, to feel like they're alone and to feel like they have to hide, to feel like they're some kind of monster."

The online harassment Mercedes faces is relentless.

Beyond being compared to fictional characters like the Thing from Fantastic Four and grotesque anime figures, people tell her she doesn't belong on social media and make false accusations about her health.

But the worst encounter happened in person at her local grocery store when her daughter was 15.

"A woman came up to me, looked at me and said 'if I looked like you, I'd kill myself,'" Mercedes said. "

"My daughter went ballistic. I had to hold her back. She was going to do some things that could probably have gotten her arrested."

Mercedes's response was characteristically graceful.

"I just smiled at her. I said 'then it's a good thing you don't' and I turned and walked away," she said. "

Both Mercedes' daughters inherited neurofibromatosis from their her - a discovery that profoundly changed her approach to visibility.

"Finding out that they had it, I really decided that I couldn't hide anymore because then that would teach my daughters that they had to hide," she said. "

"My daughters getting diagnosed really made me change my way of thinking."

Mercedes - who notes her daughters don't have bad cases - has focused on teaching her children to love themselves regardless of what happens to them with neurofibromatosis type 1.

"I raised my daughters to be strong and to love themselves and no matter what," she said."

The stares and whispers in public still affect her family, but Mercedes has developed remarkable strength.

"It doesn't bother me anymore. I am strong enough, I like myself," she said. "

"The only opinion that matters to me is my own."

Through her platform, Mercedes has received messages from people who felt isolated before discovering her content.

Some told her they had felt like "monsters" until seeing her confidence and advocacy."

"The only person's opinion about me, my body, my physicality that matters is my own," Mercedes said. "

"It took me a long time to learn that lesson, though."