Jeremiah Marshall has lived with epidermolysis bullosa since the day he was born and has had to endure teasing at school, skin cancer, and limb amputations during his life
A man who suffers from one of the rarest conditions on the planet has said his skin is so fragile it can tear from as little as just a touch. Jeremiah Marshall, 33, lives with epidermolysis bullosa, a condition that causes the skin to tear and blister with very little manipulation.
The condition, a rare genetic disorder, has affected Jeremiah for most of his life and caused him immense psychological and physical discomfort.
Jeremiah, from San Diego, California, said that at school he was called an “alien” by classmates, but that as an adult he is determined to live as good a life as he can by training to become a breathwork facilitator.
What’s more, Jeremiah’s parents have not given up hope of finding a cure for their son’s condition, one which has been apparent since he was born.
Jeremiah said that he has been “agony” since his first day of life when the skin on his right foot was “torn off” as he was being born. So significant were those wounds that they were compared to third degree burns.
Things became difficult at school too, to the extent that Jeremiah had to be home-schooled. He added: “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.”
Eventually, Jeremiah decided he wanted to head out and make friends, but soon after this occurred he was diagnosed with skin cancer. He then had to have his foot amputated whilst he was undergoing training to become a trauma informed introspective breathwork facilitator.
He said: “I had squamous cell carcinoma tumours removed from my elbow three times. And skin cancer tumours removed from my foot. 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.”
Despite the trauma he has been through since the day he was born, and the fact he has to change his bandages every four days, Jeremiah remains positive about the future. He said that he aims to create a not for profit organisation that will help him cope with the disease into the future.
He remarked: “Once I become fully certified I want to create a not for profit 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.”
On advice he would have for anyone else living with the condition, Jeremiah recommended: “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.”