Special guest post by Antoni Luke Akagi

 

Butterfly skin. EB. The worst disease you’ve never heard of.

These are all the names and descriptors of epidermolysis bullosa, a condition that affects 1 in every 20,000 to 50,000 people. October 25-31 is EB Awareness week, so I’m going to share a little about this rare condition, and introduce you to Jeremiah Marshall, a Butterfly Person whose story will inspire and encourage you. 

What is epidermolysis bullosa?

Epidermolysis bullosa is a rare genetic connective tissue disorder with many genetic and symptomatic variations. 

All who have the disorder share the symptom of extremely fragile skin that blisters and tears from minor friction or trauma. With skin as fragile as a butterfly’s wings, some refer to epidermolysis bullosa as “butterfly skin.” 

There is no cure or treatment for EB, but researchers are working hard, and the standard of care continues to improve as more is learned about the disorder. Geneticists discovered that people with epidermolysis bullosa have genetic mutations in Collagen 7A1– the protein that helps anchor skin layers together.

We take for granted the ability to stand up, sit down, and walk across the room. What seems simple to most of us can cause blisters, breakdowns, or pressure sores for people with epidermolysis bullosa. Even sleep– which is supposed to be a time for rest and rejuvenation– isn’t safe. 

Jeremiah shared that tossing and turning in his sleep can cause him to awaken with new battle scars. And he’s no stranger to battles. 

Meet Jeremiah Marshall

I was first introduced to Jeremiah when he shared his story on a business call. It’s obvious that he’s a man who has been through hell– and fought like hell to get where he is today. 

He joined me as a guest on The Journey NYC podcast to share his story. 

On August 31, 1991, at Rady Children’s Hospital in Southern California, Jeremiah was born just two days after another little boy was born with epidermolysis bullosa. Missing the skin on his right foot among other wounds, Jeremiah’s swift diagnosis is in great part because of that little boy. 

Since that day, he’s been defying the odds. Medical staff said he wouldn’t live through his first night. Then, he wasn’t expected to see 8 years old. Next, he was told he’d die before his 26th birthday. He turned 30 this year. 

Until recently, the term Butterfly Children was associated with the group affected by this genetic disorder. Well into adulthood, Jeremiah prefers Butterfly People. 

When we were children, we relied on parents, teachers, and doctors to make the best decisions for us. Now, Jeremiah’s making decisions for himself. He says that every Butterfly Person is different and should be empowered as their own specialist. 

Jeremiah was brought up with an understanding of reality while being taught not to view EB as a limitation. Over and over again, Jeremiah tells stories of strength and persistence through the pain. And we’re not just speaking in metaphors. The wounds caused by epidermolysis bullosa can take weeks or months to heal, often causing immobility in the process. While I can take a break from the gym for a week or two without major issues, the same can’t be said for Butterfly People, who are impacted by the absence of movement more than the average person. When Jeremiah injured his ankle, his calf muscles atrophied, and he recalls the exercises that caused pain in the short term to keep him on his feet in the long run.  

While his story is unique, he’s not alone. Approximately two hundred babies are born with epidermolysis bullosa each year. He’s taken to Instagram and TikTok to share his story and wants to encourage people to take the time to learn more about EB and engage with the people affected by the disorder, “If anybody’s inspired by what I’m saying here, it’s one and the same with every Butterfly. If there isn’t something you’re inspired by in my story, there’s another Butterfly that you’re going to be touched by. It’s a butterfly effect and it doesn’t stop. Once you meet one Butterfly, you’ve got to meet them all.”

I, for one, consider my life richer because I’ve met Jeremiah. 

  • Antoni Luke- Akagi

Theramu sponsored The Journey NYC Podcast episode with Jeremiah Marshall to get his story out and spread the word. We’ve only scratched the surface of our interview here. To watch or listen to the full episode, visit: 

 

For more inspirational stories, follow The Journey NYC on Instagram, Facebook, and YouTube

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