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Reading: ‘I have a rare disorder that causes my skin to tear off – trolls say I’m an alien’
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Need To Know > Fitness and health > ‘I have a rare disorder that causes my skin to tear off – trolls say I’m an alien’
Jeremiah Marshall, living with the rare skin disorder epidermolysis bullosa, overcomes immense challenges, inspiring others with his journey to resilience, spirituality, and advocacy.
Fitness and health

‘I have a rare disorder that causes my skin to tear off – trolls say I’m an alien’

Katie Dollard
Last updated: January 28, 2025 11:05 am
Katie Dollard Published January 28, 2025
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Jeremiah Marshall now. (Picture: Jam Press)
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A man who has one of the rarest conditions in the world has revealed his skin is so fragile it can tear from just a touch.

Jeremiah Marshall was born with epidermolysis bullosa, a rare genetic disorder that causes fragile skin that blisters and tears easily.

The 33-year-old says the condition caused kids to stop and stare.

READ MORE: Footballer’s wife raises £100,000 for cancer treatment after ‘gut-wrenching’ diagnosis

He was called an “alien” by classmates and spent years shutting himself in his room.

Jeremiah Marshall, living with the rare skin disorder epidermolysis bullosa, overcomes immense challenges, inspiring others with his journey to resilience, spirituality, and advocacy.
Jeremiah Marshall as a child. (Picture: Jam Press)

But after years of battling with numerous setbacks, Jeremiah is now more determined than ever to carve out a good life.

“When I was born my parents were terrified,” Jeremiah, who is training to become a breathwork facilitator, told Need To Know.

Jeremiah Marshall, living with the rare skin disorder epidermolysis bullosa, overcomes immense challenges, inspiring others with his journey to resilience, spirituality, and advocacy.
Jeremiah Marshall as a child. (Picture: Jam Press)

“They were given the difficult choice of deciding whether to end my suffering as doctors had estimated I wouldn’t live overnight or up until the age of five.”

Jeremiah’s parents refused to give up hope despite his very difficult start in life.

He said: “I was in a lot of agony from day one.

“During the birthing process, the skin on my right foot was torn off to the third layer of skin.

“I experienced wounds compared to a third degree burn.”

Jeremiah says as a child and teenager, he felt very isolated.

He said: “I experienced grade school up until high school then I was homeschooled for all of high school.

Jeremiah Marshall, living with the rare skin disorder epidermolysis bullosa, overcomes immense challenges, inspiring others with his journey to resilience, spirituality, and advocacy.
Jeremiah Marshall as a child. (Picture: Jam Press)

“I sensed a lot of whispers of my appearance from kids.

“And they would make comments towards me that I looked like an alien.

“I felt very alienated, no pun intended.

“I also felt very misunderstood, confused and frustrated.

“I never understood why they were mean to me even though I was nice to them.”

Up till the age of 28, Jeremiah found himself staying inside, avoiding social interactions and hiding himself away from the rest of the world.

But after realising how much this was affecting his mental health, he decided to make a change.

Jeremiah, from San Diego, California, said: “I decided I needed to come out of isolation and make friends in the real world.

Jeremiah Marshall, living with the rare skin disorder epidermolysis bullosa, overcomes immense challenges, inspiring others with his journey to resilience, spirituality, and advocacy.
Jeremiah Marshall now. (Picture: Jam Press)

“I was getting my confidence back.”

But a few weeks later, Jeremiah was hit again with more bad news – he had skin cancer.

He said: “With that diagnosis, I began to feel that I wasn’t really doing anything with my life, just existing and not living.

“I had squamous cell carcinoma tumours removed from my elbow three times.

“And skin cancer tumours removed from my foot.”

Nonetheless, Jeremiah persevered.

At 30, he claims he had a “profound life-changing experience with psychedelics and became more spiritual”.

Jeremiah Marshall, living with the rare skin disorder epidermolysis bullosa, overcomes immense challenges, inspiring others with his journey to resilience, spirituality, and advocacy.
Jeremiah Marshall now. (Picture: Jam Press)

And at 32, he started a certification course to become a trauma informed introspective breathwork facilitator.

He said: “In the middle of my certification training, I had to get my foot amputated.

“Because I had three different types of bacteria, eating away at the tissue.

“The same foot that I had experienced a significant amount of trauma during my birth.

“Once I become fully certified I want to create a nonprofit organisation that offers breathwork therapy in exchange for donations to help me survive and cope with this disease.

“And a portion of my profits will go towards scientific research to find a cure for epidermolysis bullosa.”

And now, he also has a set routine for managing the pain and his skin.

Jeremiah Marshall, living with the rare skin disorder epidermolysis bullosa, overcomes immense challenges, inspiring others with his journey to resilience, spirituality, and advocacy.
Jeremiah Marshall following the amputation of his foot. (Picture: Jam Press)

He said: “I do bandage changes every four days.

“In between baths I use coconut oil to manage my skin.

“I don’t take any medication for my pain, I only utilize breathing exercises to manage it.”

To anyone else with epidermolysis bullosa, Jeremiah says “pain is inevitable, but suffering is a choice”.

(Picture: Jam Press)

He added: “The mind is a muscle and it’s important to exercise it.

“We are not of the body but of the mind.

“Become just as involved in your inner world as much as you are involved with your outer world.”

READ MORE: ‘Nightmare bug bite left me fighting for life with organs shutting down’

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